Background
Deep brain stimulation (DBS) is regarded as a safe and reversible surgical treatment that involves insertion of an indwelling electrode into a specific target in the brain (Schiefer, Matsumoto, & Lee, Reference Schiefer, Matsumoto and Lee2011). For the treatment of Parkinson’s disease (PD), this is inserted within the basal ganglia to modulate the motor symptoms of tremor, rigidity and akinesia (Bang Henriksen et al., Reference Bang Henriksen, Johnsen, Sunde, Vase, Gjelstrup and Østergaard2016; Poortvliet, Silburn, Coyne, & Chenery, Reference Poortvliet, Silburn, Coyne and Chenery2015; Yu & Neimat, Reference Yu and Neimat2008). Key non-motor symptoms of PD include cognitive changes, psychological changes and reduced quality of life (Shulman, Jager, & Feany, Reference Shulman, Jager and Feany2011). Recent systematic reviews of randomised controlled trials indicate that DBS improves motor function and may improve some domains of health-related quality of life and caregiver burden (Couto, Monteiro, Oliveira, Lunet, & Massano, Reference Couto, Monteiro, Oliveira, Lunet and Massano2014; Roper et al., Reference Roper, Kang, Ben, Cauraugh, Okun and Hass2016; Troche, Brandimore, Foote, & Okun, Reference Troche, Brandimore, Foote and Okun2013). As DBS is not a cure and does not halt the progression of PD, deterioration continues over time, needing ongoing management (Fasano et al., Reference Fasano, Romito, Daniele, Piano, Zinno, Bentivoglio and Albanese2010).
Despite creating large improvements in motor symptoms and related function, DBS can worsen some symptoms or induce side effects such as possible temporary or permanent deterioration in speech, balance, cognitive function including impulsivity and impaired decision-making and mental state changes including changes to mood, hypomania, apathy and psychosocial function (Aldridge, Theodoros, Angwin, & Vogel, Reference Aldridge, Theodoros, Angwin and Vogel2016; Brandt et al., Reference Brandt, Rogerson, Al-Joudi, Reckess, Shpritz, Umeh and Mari2015; Lewis et al., Reference Lewis, Maier, Horstkötter, Zywczok, Witt, Eggers and Timmermann2015; Martinez-Fernandez et al., Reference Martinez-Fernandez, Pelissier, Quesada, Klinger, Lhommée, Schmitt and Krack2016). These changes can require timely responses and support to maintain gains from DBS treatment (Poortvliet et al., Reference Poortvliet, Silburn, Coyne and Chenery2015). The complexity of outcomes of PD treatments, including DBS, has led to a focus on multi-disciplinary care, careful support and monitoring to improve outcomes (Schüpbach et al., Reference Schüpbach, Rau, Houeto, Krack, Schnitzler, Schade-Brittinger and Deuschl2014).
Even while research was beginning to document the large, positive changes to motor symptoms, there was equally a growing awareness of the complexity of the experience and outcomes related to DBS for people with PD (Agid et al., Reference Agid, Schüpbach, Gargiulo, Mallet, Houeto, Behar, Welter, Riederer, Reichmann, Youdim and Gerlach2006). Interviews and case reports embedded within clinical studies began to show that even with substantial improvement in clinically nominated outcomes, the adjustment of the individual and their family members could be effortful and difficult (Agid et al., Reference Agid, Schüpbach, Gargiulo, Mallet, Houeto, Behar, Welter, Riederer, Reichmann, Youdim and Gerlach2006; Schuepbach et al., Reference Schuepbach, Gargiulo, Welter, Mallet, Behar, Houeto and Agid2006). Two papers published from the same study questioned, ‘the doctor is happy, the patient, less so?’ (Agid et al., Reference Agid, Schüpbach, Gargiulo, Mallet, Houeto, Behar, Welter, Riederer, Reichmann, Youdim and Gerlach2006 p. 409; Schuepbach et al., Reference Schuepbach, Gargiulo, Welter, Mallet, Behar, Houeto and Agid2006). It was suggested that the measures undertaken clinically and in trials were not providing full insights into the needs and experiences of the person with PD and that clinical care should better consider the potential for difficult experiences after DBS.
As a consequence, a growing body of quality work is providing insights into the aspects of the process and the outcomes which sit beyond those traditionally measured and monitored in clinical trials and clinical care (Mathers et al., Reference Mathers, Rick, Jenkinson, Garside, Pall, Mitchell and Jones2016). This work has involved the insights from people living with PD (e.g., Hariz & Hamberg, Reference Hamberg and Hariz2014), their family members (e.g., Haahr, Kirkevold, Hall, & Østergaard, Reference Haahr, Kirkevold, Hall and Østergaard2013) and health professionals working in the area (e.g., Bell, Maxwell, McAndrews, Sadikot, & Racine, Reference Bell, Maxwell, McAndrews, Sadikot and Racine2010). The work is regarded as important in order to better understand all relevant outcomes, including psychosocial adjustment, relationships and participation in valued roles, and thus to improve clinical practice (Schuepbach et al., Reference Schuepbach, Gargiulo, Welter, Mallet, Behar, Houeto and Agid2006; Mathers et al., Reference Mathers, Rick, Jenkinson, Garside, Pall, Mitchell and Jones2016).
The decision to have DBS is an important part of the DBS process (Hamberg & Hariz, Reference Hamberg and Hariz2014). The decision process can be complicated, with individuals and families having to negotiate referral pathways and clinician attitudes towards DBS. A mixed methods study indicated that having a lower disease severity, higher level of DBS-related knowledge and the ability to weigh up risks enabled people with PD navigate this process more successfully (Hamberg & Hariz, Reference Hamberg and Hariz2014). Support from relatives and information from other patients was influential in the decision-making process. Health professionals also identified the important role of expectations and hope on the process of making the decision and subsequent adjustment to outcomes (Bell et al., Reference Bell, Maxwell, McAndrews, Sadikot and Racine2010).
Exploration of the experience and needs after DBS for people living with PD has occurred in a small number of high-quality studies supporting that the needs and experiences of people were diverse and beyond those monitored in traditional trials or clinical practice (Hariz & Hamberg, Reference Hamberg and Hariz2014). A seminal piece of research used hermeneutic phenomenology, guided by four lifeworld existentials (lived body, lived time, lived space and lived other), to describe the perspectives of the patient with PD and their family member around the time of DBS treatment (Haahr, Kirkevold, Hall, & Østergaard, Reference Haahr, Kirkevold, Hall and Østergaard2010, Reference Haahr, Kirkevold, Hall and Østergaard2011, and Haahr et al., Reference Haahr, Kirkevold, Hall and Østergaard2013). This work indicated the large breadth of changes experienced by individuals and their family and recommended the need for consideration of these changes in clinical practice. They noted that a complex adjustment period exists after DBS, which comprised of three stages (Haahr et al., Reference Haahr, Kirkevold, Hall and Østergaard2010). The first stage occurred directly after surgery and was characterised by a substantial improvement in physical function in a short time (Haahr et al., Reference Haahr, Kirkevold, Hall and Østergaard2010). The second stage focused on the process of adjustment to medication and stimulator settings which was challenging and required resources and support. The third stage, a stable life, involved people with PD integrating post-DBS changes into their lives, increasing independence and reengagement in valued activities. While participants indicated an overall positive outcome of their DBS treatment, the difficulties experienced during the adjustment were identified as unexpected and challenging, and participants noted that support and education about what to expect would be helpful (Haahr et al., Reference Haahr, Kirkevold, Hall and Østergaard2010).
Although there has been research reporting the lived experiences and perspectives of people living with PD undergoing DBS for more than 10 years, there has been little translation of the findings into clinical practice. In an attempt to draw together findings, metasyntheses have been conducted (Liddle, Allen, & Chenery, Reference Liddle, Allen and Chenery2014; Mathers et al., Reference Mathers, Rick, Jenkinson, Garside, Pall, Mitchell and Jones2016). These have indicated the usefulness of temporally organising the needs and experiences to indicate times of heightened need (Liddle et al., Reference Liddle, Allen and Chenery2014). Mathers and colleagues’ metasynthesis of seven qualitative studies noted the particular importance of normality, hopes and control during the experience of DBS and constructed a chronology, indicating that transition points before and after DBS were times that required more attention and support for patients and their families (Mathers et al., Reference Mathers, Rick, Jenkinson, Garside, Pall, Mitchell and Jones2016). Importantly, Mathers et al. (Reference Mathers, Rick, Jenkinson, Garside, Pall, Mitchell and Jones2016) stated there is a need for further research to draw out the exact nature of the transitions experienced during DBS treatment and to elicit the best ways to support people with PD undergoing DBS and their family members.
Methodology
A qualitative description design (Neergaard, Olesen, Andersen, & Sondergaard, Reference Neergaard, Olesen, Andersen and Sondergaard2009; Stanley, Reference Stanley2015) was employed to explore the experiences and needs related to DBS for people with PD, their family members and health professionals. The methodology was influenced by some of the ontological and epistemological underpinnings of descriptive phenomenology (Langdridge, Reference Langdridge2007) and aimed to describe the lived experience, rather than developing conceptualisations (Neergaard et al., Reference Neergaard, Olesen, Andersen and Sondergaard2009). A descriptive approach was selected in order to enable translation of core shared need and clinical strategies into clinical practice. Value was placed on individuals’ descriptions of their own experiences and finding the shared aspects amongst the group who shared these experiences. Data were gathered in the form of semi-structured interviews with key stakeholders. Ethical approval for the study was obtained from the relevant ethics committees at UnitingCare Health and The University of Queensland.
Participants
Stratified sampling was used to collect diverse perspectives from people likely to be rich sources of personal experiences and perceptions (Langdridge, Reference Langdridge2007). Key stakeholders were people with PD who had DBS treatment, family members and clinicians working in DBS. Participant sampling aimed to include a range of experiences including time since DBS, gender of people with PD (and family member) and geographic location of the participants. For clinicians, discipline and geographic location were considered. Recruitment involved seeking participants with characteristics and experiences not yet included (Langdridge, Reference Langdridge2007).
Each participant group had their own specific inclusion criteria. The first participant group was adults with a diagnosis of PD who had received DBS treatment at any time and was able to participate in an interview. The second participant group was adult family members who were identified by the person with PD as maintaining a caregiving capacity throughout their DBS experience. The third participant group was clinicians who had experience working with people with PD who had received DBS.
Potential participants were excluded if they did not have relevant experience as defined above, if they were unable to communicate sufficiently in English to provide informed consent and participate in semi-structured interviews, or did not consent to have the interview audiotaped.
Data collection
Information about the study was provided to neurology clinics, Parkinson’s disease support groups and clinician networks. Potential participants contacted the researchers and received information about the study. If they wished to participate, they signed a consent form and participated in an audiotaped interview, either face-to-face, or via telephone or Skype. People with PD and their family members could be interviewed together or separately depending on their preference and availability. Recruitment continued until a range of experiences was included (Stanley, Reference Stanley2015), occurring over a period of 12 months from August 2013 to August 2014.
The semi-structured interviews utilised an interview guide (Supplementary Appendix 1) to ensure consistency and lasted around an hour. Interviews were conducted by one of two interviewers over the course of the study. Participants with PD and family members were asked about their lived experiences including the decision to have, and experience of, DBS, what supports and strategies they used or would have liked, and their past or ongoing support needs. Clinicians were asked about their clinical experiences in DBS practice and their perspectives about the experiences and needs that people with PD and their families have when undergoing DBS. The interviews were transcribed verbatim.
Rigour of the analysis was addressed by undertaking participant checking with single-page interview summaries of key content sent to participants to check for accuracy and enable inclusion of additional information or perspectives post-interview (Patton, Reference Patton2015). This enabled a process of increasing credibility in the findings by checking that aspects of the experience that emerged and had been identified by the research team as important, were also considered to be important by the stakeholders’ experiences. Three participants added additional information which was included in the analysis. A researcher’s log was kept during data analysis to enhance rigour encouraging reflexive reflection and transparency of research decisions within the process (Patton, Reference Patton2015).
Data analysis
Data analysis involved finding the shared and important key aspects of the described experiences following the qualitative description approach (Stanley, Reference Stanley2015) to arrive at core content areas reflecting the experiences. An inductive analysis involved transcripts being read for familiarity and summarised individually to gain an understanding of each participant’s experiences and develop preliminary content categories. This was undertaken independently for all transcripts by two members of the research team (JL and GB). It became clear during this iterative process that the three groups were providing inter-related information and were analysed together. Four shared temporal stages emerged from the data and were used to create a matrix of experiences and needs during each of the stages (Liddle, Carlson, & McKenna, Reference Liddle, Carlson and McKenna2004). The matrix was utilised to organise the experiences, needs and events for each transcript, with analysis exploring the shared and individual experiences at each key time in the process. GB analysed all transcripts using the matrix, and coded transcripts according to matrix sections, with this analysis checked by JL, and two to three transcripts from each group were independently checked by LG. During this process the research team met, discussed, explored and mapped emerging content areas capturing the described needs. Peer checking between JL, LG and GB to ensure confirmability of the coding process helped shape content categories into four content areas, with subcategories reflecting the process, events and related needs. Direct recommendations for improving the process and experiences by participants were also organised in the content areas. In improving the rigour of the study, reflexivity (Patton, Reference Patton2015), or the potential for the researcher’s biases and experiences to influence findings, was considered as the research team conducting analysis was comprised by occupational therapists who had not worked clinically in this area and therefore identified themselves as novices and the participants as the experts in the experiences of DBS.
Dedoose (Dedoose, 2016), Microsoft Word and paper-based coding were all used during analysis to organise and code transcripts. Pseudonyms have been used in reporting the findings to protect participant anonymity. Verbatim quotes are provided for illustrative purposes.
Results
Participants
Thirty-five people participated in the study, including 14 people with PD. Their demographic information is given in Table 1. Ten family members, aged between 43 and 72 years (median = 65), participated in the study including six women and two men. Eight family members were spouses, and the other family members were one sister and one son. Eleven female clinicians participated in the study comprising four specialist neurology nurses, three physiotherapists, one physiotherapy assistant and three speech language pathologists. These professionals had been working with people with PD for between 3 and 30 years (median = 8), and most worked in organisations that involved a combination of community and hospital care and provided services to people undergoing DBS within the public and private health systems.
Demographic and disease information of participants with Parkinson’s disease
The participants with PD and their family members described experiences that were highly personal and individual; however, common aspects were shared. Health professionals also tended to report individual client experiences and examples, although could also draw together some commonalities. The DBS experience was organised into four stages with each stage having a unique focus in terms of experiences and needs. In the first stage, people with PD and family members were Considering DBS and learning about PD, DBS surgery and the potential outcomes. In the second stage, Surgery and Support, people with PD underwent surgery and recuperated during the immediate recovery period. During the third stage, Seeking Stability, people with PD and families experienced DBS-related role changes requiring adjustment, while a process of medication and stimulation setting optimisation occurred. In the final stage, Next Steps, people with PD had adjusted to the changes related to DBS, were describing challenges and needs, and were moving towards actively managing their condition. These are summarised in Table 2. Every person with PD described their overall DBS outcome as positive indicating they would make the same decision to have it again based on their experiences although many indicated aspects of the process they would manage differently. Each stage will be considered in more detail below, providing first an overview and then an exploration of subcategories within the stage.
Events, experiences, needs and clinical considerations of people with PD by stage
Considering DBS
In this first stage, participants with PD and their family members described starting to consider DBS when they felt that existing management was becoming less effective, causing an increase in symptoms, medication side effects and greater difficulty engaging in daily tasks. The main events of this stage were around information seeking and making the decision to undergo DBS. This underpinned a larger, major decision over whether to relinquish the regular management of their condition to the DBS team, who may or may not be their regular care team. A range of information helped to inform the decision to undergo DBS. General media played a role in creating awareness and strong expectations about DBS and all participants with PD received formal education materials, generally from their DBS team or a Parkinson’s organisation or support group. As part of their care, all had been involved in discussions with their DBS team to describe the process, clinical information and its likely outcomes.
Overall, participants with PD and their family members were satisfied with education provided at the time, though many later described experiences related to DBS that felt unexpected. These included temporary side effects, like changes to mood or sleeping, and new symptoms, including changes to communication or movement. In reflecting on these, participants with PD and their family members indicated that while they had been told these may be experienced, actually experiencing them seemed different and unexpected. Clinicians suggested that effective education required different approaches based on the preferences and life experiences of individual patients. People with PD and their families supported this view with Lizzy (person with PD) and her husband Stan, only wanting limited information.
Stan: I think you can sort of overload people, too, with information. They might say this is what could happen, might happen, ta-da-da. And then they pick up something, ‘But you didn’t tell me that.’ And they start worrying about it. Whereas the information that Lizzy got, that was plenty. That’s all we wanted to know.
Lizzy: Yeah. I think I got enough information to know what was going to happen.
George (person with PD), on the other hand, described seeking detailed information including scientific information about the process and the outcomes. ‘I did a lot of research beforehand. I knew what was going to happen. I knew the statistics and I’d talked to a few people’.
A process of evaluating the information and developing trust in the decision and the team was described. Shared experience from peers was a key aspect in decision-making for some people with PD and family members. Talking with someone who had already undergone DBS provided valuable insights into the lived experience of DBS as described by Trina (clinician) ‘I find peer support most useful. I can tell them what it might be like until I am blue in the face, but I have not had it done’. This was strongly recommended by members of each participant group. Matt (family member) suggested that ‘I’d be talking to other people who’d had the operation, [and asking] what are your real problems, what do you want to get out of it, and what do you think you can get out of it?’ However, peer education was not sought by all, with some people with PD actively avoiding peers, citing previous negative experiences with support groups, including negative interactions, forceful opinions being shared or worrying insights into potential future experiences.
With making the decision, the experiences of people living with PD and their family members illustrated points of difference from this initial stage. While most participants in all categories described a process of actively working towards a consensus between the person with PD and their extended family as to the correct decision regarding DBS, some family members indicated that it was not their role to decide. ‘Well, I let him decide that because it was his body. I don’t think I would have had it because I didn’t think he was bad enough’, Joan, family member. Others described a parallel process of information seeking and sharing amongst informal networks, particularly if the person with PD had opted for minimal information before making the decision. ‘I think both people need to be well informed, I think that’s important and even other family members and or friends. I really went out of my way, Dianne doesn’t even know this, but people would send me stuff about Parkinson’s and I’d likewise send it out to other people so that everyone had a bit of an understanding’, Carl, family member.
During this stage, people with PD and their family members established their expectations and beliefs about DBS. Individual goal setting was identified by participants as an important clinical approach to support the education given and clarify realistic expectations. On reflection, participants described having a better understanding of potential physical improvements, with less understanding of the potential non-motor or life change related challenges. Expectations and personal goals were described as related to symptom reduction, improved abilities or reduced medication. Some people with PD and family members reflected that they had hopes for their DBS that exceeded their true expectations of outcomes and goals discussed with their health team. Dianne (person with PD) described her hopes of DBS, ‘I was going to be pretty well cured of everything’. She and her husband reflected that this was not the expectation or goal discussed with her team or that family members held, but more representative of what she would have liked to have happened. They identified that these hopes shaped their experiences of the subsequent stages.
Surgery and Support
The second stage, Surgery and Support, incorporated the time immediately prior to having the operation until the acute recovery from the surgery. A clinical emphasis predominated with a focus on the operation and associated medical appointments, assessments and scans, and the condition almost completely managed by the clinical team. While this stage was described as being intense, people with PD felt well supported by clinicians and family. At this stage, participants noted that it was important to feel a large amount of trust in their treatment team and to hand the management of their PD over to them.
A focus on pre-surgical and surgical procedures surrounded this stage. People were generally focused on the operation itself. George described his initial personal goals as ‘To survive the operation, it is a pretty confronting operation, of course’. All participants with PD and family members clearly expressed a preference for not receiving education at this stage of the DBS process. Receiving education from clinicians or peer support groups at this time was described as frustrating or distressing for people with PD and families. Dianne (person with PD) and Carl (her husband) described their experience with a peer educator in hospital:
Dianne: Yeah. It [peer education] shouldn’t have been given to anyone in hospital having it that next day.
Carl: You’re already committed once you’re there.
Dianne: Yeah ‘cause you came in, I said, ‘Take me home, take me home.’ And you had to figure it all out, yeah, and even [other patient], the other lady, she was rattled too by him.
Post-surgery recovery was a time that people anticipated a need for greater care and clinical support. A clinical focus predominated. People with PD reported difficulties that felt unexpected, such as changes to mood and behaviour, immediately after surgery. During this stage Michelle (family member) described her brother as ‘seriously hyper, that really concerned me’. Most of these difficulties were described as quickly resolving. Family member participants tended to report issues occurring at this stage more frequently in interviews, with the participants with PD often either not being aware of or not concerned by the acute changes, placing the responsibility and need to act on the family member. All participant groups indicated the need for quick responses from the clinical team during this stage, for both clinical management and reassurance of patients and their families.
While most concerning changes occurring in this stage resolved quickly, the unexpected nature of these difficulties often created worry for people with PD and family, with participants reporting that they would have liked immediate support and reassurance that these issues were temporary or an expected response to the treatment. Participants also described the relief and gratitude related to experiencing some immediate improvements, with Lauren, family member, describing seeing her husband after surgery as ‘when I saw him it was just like it was almost a miracle because he had the typical frozen face. And I looked at him in the chair and his face was alive again. Unbelievable’.
Seeking stability
The third stage was described as an adjustment process after surgery. This adjustment period was effortful with unexpected difficulties post-surgery and the need to navigate role changes. An overarching experience was one of the work and effort required by the experiences of change, and the management of these as a team involving clinicians, the person with PD and family members. A clearly described event in this stage for most participants was immediate DBS-related improvements in PD symptoms, abilities and engagement in previously valued activities.
Throughout this stage, improvements fostered a greater sense of health, happiness and independence. In experiencing these changes, the person with PD and the family members was aware of the changes, though family members were more likely to describe some concerns about the way in which the changed symptoms related to changes in daily life. Some expressed concern that the person with PD was not doing more and embracing independence, while others were concerned about the magnitude and rapidity of the changes experienced. Health professionals noted that the positive changes may require support for the family members, ‘the person who’s got the Parkinson’s then changes because they’re more independent, and then the partner has been very much just carer role, which then basically needs to change, and it can be quite a sudden change because of the stimulation surgery being successful… maybe a bit more focus on the carer and how they’re going to cope and adjust as well, ‘cause there’s so much focus on the patient. Sometimes we need to involve the carer or the partner a little bit more’, Sandra, health professional.
Changes to symptoms, settings, medications, activities and interactions were reported in this stage. Participants noted that an active stage of titrating medication levels and stimulator settings to achieve good symptom control could be resource intensive. People with PD and their families also described a variety of unexpected post-surgical difficulties and changes that were often attributed to DBS, medication side effects or new aspects of their PD. These changes included falls, changes to voice and communication, altered mood and behaviours including impulsivity and aggression. Despite receiving education prior to DBS about the possibility of these occurring, all participants felt that part of the unexpectedness related to the difference in living the experience, rather than hearing about it. As such, a substantial amount of problem solving and persistence was required to overcome these challenges. More education and practical support to bridge these challenges was suggested by people with PD, clinicians and family. Barry (person with PD) talked about how being able to get in contact with his treatment team in an ongoing way was important, even when things seemed to be stable:
I can email the doctors … at any time I want and I get a response within 24 hours and that certainly is encouraging ‘cause it’s going to be a change. The Parkinson’s I have now and never goes away; it’s just the controlling method that we have on it at the moment is working
Participants in all categories described family as a major source of support for people with PD. Family was noted to share the adjustment processes and associated stress. However, improved abilities related to DBS often reduced carer burden and concern as illustrated by Matt (family member), who lived remotely from his father with PD, suggesting that DBS ‘gave me a peace of mind for me that he can dress himself, shower himself and cook for himself’. As function improved for individuals with PD, their family members adopted new roles, changed roles or ceased roles all together. Lauren (family member) described the challenges of experiencing improvements, ‘I was used to doing a lot of the jobs myself [before surgery], then he’d come in and he’d start doing things without any sort of consultation. The first six months were pretty rocky’. Thus, changing roles and unexpected difficulties could create stress between people with PD and family members. It was suggested that more timely intervention including psychological support, relationship mediation and practical strategies may assist.
During this stage, pre-surgery goals for improvement were spontaneously adjusted in response to improvements already experienced post-surgery, reflecting more ambitious aims and expectations. This series of goal shifts away from the original goals could make people feel as if sufficient progress had not been made.
Stability, rather than continuing improvement, emerged from the stage of initial improvements from surgery and the optimisation of stimulator settings and medication levels. Participants described how this lack of continued improvement could be disappointing after the initial rapid improvement and high hopes. At times, people could not easily and accurately remember what their original goals or difficulties were. Bob (person with PD) described having met his original goals, but feeling some mild disappointment that he could not easily define.
Interviewer: So was there anything unexpected after deep brain stimulation, anything that was surprising or different from what you were thinking it was going to be?
Bob: No. I was just hoping I’d [be] better than what I am.
Next steps
The final stage was described as a shift away from a clinical, adjustment-focused experience back to a more settled life, with participants taking on new roles and routines. Clinically, it was a time of more stability, and reengagement in the self and family management of the condition. People with PD described being able to engage in valued activities due to the increased function that DBS provided. Barry (person with PD) described the function he enjoyed after DBS surgery, ‘I now socialise a lot with friends, will go out quite often. Before the surgery I had trouble lining up to get a sandwich or to pay fuel for my car or to carry conversations out with people was near impossible. Now it’s just normal back to day-to-day’.
This final stage appeared to be reached when people resumed an enhanced role in the management of their condition after relying on others during the time around surgery. The early adjustment difficulties or symptoms were more actively managed and described as less concerning by participants. Some participants used professional support to help them re-engage with their illness management, while others utilised daily routines and meaningful activities to manage their PD. At this point, there was adjustment by family members to the new lower level of support required and a more cooperative approach to illness management and household activities.
Enhanced engagement in roles and activities for both the person with PD and their family members was reported. For family members, often a resumption of their own activities and roles, independent of the carer role, could occur. Some family members did note their concern about their need to resume the role in the future, ‘there’s going to be more stressful times, I’m sure’, Lauren, family member.
Despite a much improved quality of life, this stage also involved the realisation that the PD would continue to progress. George (person with PD) described the changes since his surgery 4 years ago, ‘Since then, these settings have gone up a fair bit. They started at about one volt, and now [they’re] at about three on one side and about two and a half or two point two on the other side. So that probably indicates the disease is carrying on’. The continued progression of PD was identified as requiring allied health therapies, ongoing monitoring of suitable DBS and medication levels, and changes to roles and routines. A need for support for adjusting to this deterioration, after the period of rapid improvement, was noted by some people with PD and health professionals.
Discussion
This study explored the experiences and needs of people undergoing DBS from different perspectives to address the gap identified in the existing literature, of increasing the understanding of the transitions related to DBS. These findings, as well as direct recommendations from participants, can then be used to inform considerations for clinical practice (see Table 2). The results build on previous work (Haahr et al., Reference Haahr, Kirkevold, Hall and Østergaard2010, Reference Haahr, Kirkevold, Hall and Østergaard2013; Mathers et al., Reference Mathers, Rick, Jenkinson, Garside, Pall, Mitchell and Jones2016) demonstrating a stage-based transition through the DBS experience for people with PD and their families and supporting that adjustment may be complex and individual. The results identify support and education needs for the person living with PD and their family members that are mapped against each stage.
The stages found in this study provide a structure to the events, needs and clinical considerations during the DBS process and add an indication of the shifts in control over the management of the condition, between the individual and their family and the clinical team. This helps to build the understanding of the nature of the transitions identified as a gap in the existing literature (Mathers et al., 2016). In addition, direct recommendations for clinical considerations during the process have also been temporally organised. This drew on the personal experiences of people with PD and their family members and also the clinical experiences of health professionals. The findings clarified that the process required support and involvement from all of the stakeholders to optimise the transitions experienced. It also helped clarify where unmet needs might occur and who may be well placed to meet the needs. Points of the process at which different involvement may be optimal were highlighted, including transitions from clinically focused approaches around the time of surgery to eventual resumption of self-management. Health professionals also identified the need for family-focused supports at points in the process, which was supported by family participants’ description of needs and difficulties.
This understanding of people’s experiences and needs during each stage can be used to help clinicians frame their supports and interventions during the DBS transitions (Mathers et al., Reference Mathers, Rick, Jenkinson, Garside, Pall, Mitchell and Jones2016). The existence of a temporal process for DBS experiences and adjustment is not a new finding and is consistent with the stages reported previously across a number of studies. This consistency suggests that there are commonalities to the DBS experience between different clinical and geographical contexts. The metasynthesis of major qualitative studies (Mathers et al., Reference Mathers, Rick, Jenkinson, Garside, Pall, Mitchell and Jones2016) plots a chronology of adjustment prior to DBS, including changes related to losses of control from PD symptoms and hope for the procedure. Post-DBS, an initial euphoric stage, is followed by an adjustment period marked by transitions and changes and resolved in a final stage marked by a movement towards a new kind of normality. While the findings of each study reflect the methodology and particular focus in exploring the DBS-related lived experiences, all studies consistently identified key experiences of adjustment, having expectations and hopes, times of uncertainty, strain on relationships and dealing with new symptoms.
People with PD have indicated a desire for a stronger shift towards person-centred research and practice as the only way to meet their complex needs (Moro, Reference Moro2014; Schipper, Dauwerse, Hendrikx, Leedekerken, & Abma, Reference Schipper, Dauwerse, Hendrikx, Leedekerken and Abma2014). Amongst the recommended clinical considerations, participants desired individual approaches with relevant and personalised support during the adjustment period. Individualised treatment based on shared decision-making, person-centred practice and multi-disciplinary practice has been suggested as the ideal service model for people with PD (Young, Jones, & Baker, Reference Young, Jones and Baker2010). The stages indicating key times and a focus on personally acceptable information sharing and individualised goal setting may help clinical teams to take a person-centred approach to clinical care and support during DBS treatment. This study also indicated the relationship challenges and important role of family within the DBS process. Both positive and negative relationship role changes after DBS have been well documented, suggesting that dedicated relationship support may be required for some people (Haahr et al., Reference Haahr, Kirkevold, Hall and Østergaard2013; Mathers et al., Reference Mathers, Rick, Jenkinson, Garside, Pall, Mitchell and Jones2016; Schuepbach et al., Reference Schuepbach, Gargiulo, Welter, Mallet, Behar, Houeto and Agid2006). The current study also indicated that family members may in fact have different educational and support needs to the person with PD, and teams may need assistance to consider and support this. Clinical approaches to DBS, therefore, need to consider and include family members and caregivers within the education and support processes.
The need for education to support the process of DBS was articulated in the current study, including the different needs at different stages and the potential need for different approaches for family members. It is well established that education plays a key role in both developing and managing expectations in DBS (Bell et al., Reference Bell, Maxwell, McAndrews, Sadikot and Racine2010). Participants regarded the pre-surgical education as meeting their needs at the time; however, challenges within the process were experienced as unexpected and unsettling. This may indicate a need to further explore the education and support process in order to provide information in a form that is acceptable and meaningful at the appropriate time. While the lived experiences of others who have experienced DBS were regarded very positively, some participants indicated finding traditional (support group) methods of getting this information to be unacceptable, and the location and timing of the peer information were also very important. For example, while peer-led education was important in Considering DBS and Seeking Stability, it was experienced as distressing by some participants in Surgery and Support. The need to have accurate information available through different mechanisms and to different levels of detail is something that has been identified as important generally for caregivers of people with PD (Theed, Eccles, & Simpson, Reference Theed, Eccles and Simpson2017).
Participants indicated that although they were told about a potential clinical experience or complication, sometimes living the experience was very different from what they had expected. There may be benefit in exploring the timely sharing of more experiential information (rather than clinical terms and symptom lists). Including the words of people with PD and their family members in educational material may help to improve comprehension and development of realistic expectations. An alternate method for providing timely support may be with telehealth media, ensuring appropriate support and information is available when required (Dorsey et al., Reference Dorsey, Venkataraman, Grana, Bull, George, Boyd and Biglan2013). Flexibly available online communities may assist in availability of support (Visser, Bleijenbergh, Benschop, Riel, & Bloem, Reference Visser, Bleijenbergh, Benschop, Riel and Bloem2016) from those familiar with the lived experiences related to DBS.
Expectations about DBS seemed to influence the subsequent experiences of the participants in this study, which supported earlier research by Bell and colleagues who suggested unrealistic expectations are a core barrier to satisfaction with DBS (Bell et al., Reference Bell, Maxwell, McAndrews, Sadikot and Racine2010). In this study, post-surgery experiences and satisfaction seemed to be shaped by initial hopes about DBS. Expectations and hopes were influential during the goal shift that occurred during Seeking Stability. The clinical considerations in this study identified the importance of considering, supporting and adapting goals throughout the process. It was important to note that although goals and education described by participants seemed to be generally realistic, they also reported substantial additional hopes that they did not discuss with their team. It appeared as if these hopes were drawn upon during periods of marked and ongoing improvement and an accurate reflection of previously set goals and previous level of functioning seemed challenging. Clinical considerations suggested a more structured functional goal setting and revisiting process at regular intervals after surgery may help people with PD manage these shifting goals and better understand their achievements. The use of clear and function-related goal setting with health teams, patients and families before DBS surgery (rather than symptom-related goals) for children with dystonia has been utilised to create realistic expectations (Gardner, Reference Gardner2017).
The importance of active self-management approaches for people living with PD is accepted and education and systems to support this have shown promise in improving outcomes (e.g., Bloem & Munneke, Reference Bloem and Munneke2014). The stages and clinical considerations elicited in this study indicate that in undergoing DBS, participants seemed to undergo a process of handing management responsibilities over to a clinical team and needed to be able to reengage in self-management in order to move beyond a focus on the DBS process and reengage in meaningful participation in the Next Steps stage, which seems to reflect Haahr and colleagues reconciliation stage (Haahr et al., Reference Haahr, Kirkevold, Hall and Østergaard2010). To our knowledge, there has not yet been an explicit focus on self-management-based education and support within DBS-based clinical services, but it appears relevant.
Limitations and future directions
This study adds to the knowledge base about the experience and needs of people with PD undergoing DBS and their family members. It builds on gaps within the literature identified by Mathers et al. (Reference Mathers, Rick, Jenkinson, Garside, Pall, Mitchell and Jones2016) of a limited body of qualitative research on this topic, the introduction of a new context, and building understanding about specific education and support needs and clinical considerations for people with PD and their families. The generalisability of the findings of this study to other contexts requires consideration. The participants with PD and their family members in this study all reported that their DBS experiences had led to an overall positive change in their symptoms. This is not the case for all people with PD and may change at different stages of the process. This study excluded people who were not able to communicate easily in English thereby not capturing the perspectives of people from different language and cultural backgrounds, and those with communication difficulties. Medical specialists were not included in the study as they were potentially identifiable due to relatively small numbers within the Australian context. No occupational therapists, psychologists or social workers were able to be recruited, despite efforts to include them. This limits the clinical insights garnered from clinician perspectives. New research could seek to include these groups and gather other professional perspectives of DBS-related experiences.
Using retrospective reflection rather than longitudinal exploration of current needs enabled an overall impression of the experiences and needs that turned out to be important when considering all aspects. However, retrospective recall can be influenced by memory of events, altered perceptions based on current situations and may not directly indicate what the person felt their needs were at the time. Future research should explore current experiences and needs longitudinally to further examine timing and nature of clinical needs.
Conclusion
The findings described the experiences and needs of people with PD who underwent DBS and their families. Four stages, each with different needs, were identified suggesting that different education and support approaches as well as clinical considerations may be required throughout the process of DBS for people with PD and their families. Throughout each stage, individualised support and education were important. Support for relationships, goal setting, managing expectations, adjustment to participation and self-management of their condition were indicated. These identified stages and clinical considerations may provide clinicians with a structure for intervention avenues to improve the care pathways and outcomes for people with PD and their family members.
Supplementary materials
For supplementary material for this article, please visit https://doi.org/10.1017/BrImp.2019.3.
Author ORCIDs
Jacki Liddle, 0000-0002-6336-9898
Acknowledgements
The authors thank the participants for sharing their personal experiences and the clinicians for sharing their clinical perspectives.
Financial support
This research received no specific grant from any funding agency, commercial or not-for-profit sectors.
Conflict of interest
The authors declare no conflicts of interest. At the time of conducting the research, Jacki Liddle and Peter Silburn were employed by the Asia-Pacific Centre for Neuromodulation (APCN). The APCN was in part funded by unrestricted research and education funding from Medtronic Inc. and St Andrew’s War Memorial Hospital. The funding bodies played no part in the design or conduct of the research or its reporting.
Ethical standards
The authors assert that all procedures contributing to this work comply with the ethical standards of the relevant national and institutional committees on human experimentation and with the Helsinki Declaration of 1975, as revised in 2008.
