Individuals’ perceptions of health and well-being in the context of stereotactic radiosurgery for benign brain tumour: A longitudinal qualitative investigation

Figures & data

Table 1. Demographic and health characteristics.

Variable	M(SD), n(%)	Range
Gender
Male	8 (35%)
Female	12 (65%)
Age (years)	47.65 (14.95)	24–71
Relationship Status
Single	3 (15%)
Married	14 (70%)
Defacto	3 (15%)
Employment Status
Not employed	25%
Retired	15%
Part-time work	10%
Full-time work	40%
Self-employed	10%
Tumour Type
Meningioma (WHO grade I or I and II)	8 (40%)
Acoustic neuroma	8 (40%)
Pituitary adenoma	3 (15%)
Trigeminal schwannoma	1 (5%)
Immobilisation during GKSRS
Frame	17 (85%)
Mask	3 (15%)
Procedure-related Medication
Dexamethasone use (reported at T2)	11 (55%)
Tumour Status		0–9
Years since diagnosis	2.4 (2.6)
Prior treatment
Surgical resection or debulking	9 (45%)

Table 2. Summary of themes, sub-themes, code/descriptors and illustrative quotes.

Themes	Sub-themes	Descriptors	Illustrative quotes
Theme 1: Understanding my illness and treatment	Confusion around symptoms Connecting and relating symptoms	Unexplained symptoms Uncertainty or confusion regarding changes in body, emotions, and mind Symptom and tumour location related Symptoms exacerbated by stress Procedure and medication related side-effects	“I have felt like a weird brain fog this year and bits of last year. I just felt I wasn’t as sharp thinking, I felt like something in me wasn’t right, I couldn’t put my finger on it.” [P006 T1] “I’m not sure why my hearing might be compromised. I don’t know if it’s compromised” [P015 T3] “And I have slight double vision but um … my brain has learnt, I only notice that when I think about it now, so my brain has learnt to adapt to that as well and that is actually connected to the tip of the facial nerve that’s numb.” [P005 T1] “Just before I go to sleep laying down at night, you know, laying down on the back of my skull and I’ll get a sensation like a ring around connecting the four points. So, I don’t know if is like a PTSD or you know like a memory type thing or experience.” [P006 T2]
Theme 2: Experiencing Gamma Knife	Unexpected versus expected Outcomes and side effects Daily impacts Emotional response to treatment and outcomes	Unexpected side-effects experienced Some expected side-effects not experienced Expected to bounce back more quickly Improvements and deterioration in function (e.g., headache and skull pain, vision, hearing, balance, sleep, cognition, energy and sleep) Reduced ability to engage in normal activities Inability to leave the house Increased dependence Inability to work Increased productivity at work Increased independence Fear regarding side-effect Distress related to ongoing side-effects and outcomes Loss of confidence Happier	“I think I was prepared for kind of … I’d have the procedure and I’d be back at work in maybe a week, maybe two … When you know 3 months after and I’m still here.” [P001 T3] “Overall … I had anticipated lots of headaches, I haven’t had those. Occasional ones, I did not anticipate the high level of, or the level of nausea, and I was quite sick.” [P004 T2] “I actually find that I can concentrate better now. I was finding myself a little bit frazzled between tasks and I found at work I was starting to feel a little bit overloaded and I couldn’t multitask, but that is all starting to come really good now as well” [P021 T3] “A week and two days since the procedure and I have suffered what I would call significant vertigo for several days” [P004 T2] “I’m still suffering some balance issues which come and go. I might have two or three days, feeling a little bit uncomfortable” [P004 T3] “Oh, it has had an impact. I’m tired and cranky and frustrated, which then goes into work stresses and with the kids, and they cop it a little bit sometimes” [P021 T2] “I have a lot more energy, which is good. I’m able to do more with the kids and I’m not just tired all the time and can’t spend time with them and things like that. So, I’ve been able to get out and do more with them” [P021 T3] “So, I am pretty much house bound at the moment, only because my hearing has pretty much not been settled down since I had the Gamma. It’s really heightened hearing” [P001 T3] “I was very panicky, so I was very on edge about going to bed, I didn’t sleep very well because I was on steroids but also, I was also panicking that I would wake up in the morning and have paralysed nerve based on that” [P005 T2] “I do find that my brain tends to be anxious, for example I might just start looping and obsessing over what’s the radiation going to have impacted me long term.” [P005 T3] “So, I seem normal, healthy, happy and if you saw me in a bar, you see a positive person that’s in a good mood.” [P019 T3]
Theme 3: Adjusting mindset and coping	Mindset and appraisals Behavioural coping mechanisms Accessing support systems	Diverse outlooks and appraisals reflecting: Growth and gratitude Hope and optimism Acceptance and perseverance Resistance and despair Medication to manage symptoms/side-effects Relaxation techniques Memory aids Withdrawal/avoidance Planning/organisation Physical exercise “feel good” activities Prayer Family Friends Psychologist Emotional support Financial support Assistance with workload	“I don’t want to be doing that. I’m 3X years old, I mean I shouldn’t be frigging having to sleep in the day … I just want to be normal, I want to do what everyone else does” [P015 T1] “There is a pretty good light at the end of the tunnel” [P004 T2] “I usually cope all right with my emotions because I take three anti-depressants at night” [P010 T2] “With the fatigue, I do structure my days so that they’re not too full on generally speaking, so I’m not racing around doing too many things. I’ll only do two things on one day and stuff like that” [P015 T2] “Like I must admit I panic sometimes or overthink things, quite often the girls will say to me ‘mum, don’t overthink it, just let it happen’. So that was good, that sort of helped me a bit.” [P002 T3] “I’ve got my granddaughter who lives at home - she’s really good to talk to” [P010 T1] “It’s just the bit of company I get affects me. Makes me feel good sometimes if I’ve got someone in the house and that.” [P010 T3]