A qualitative study—Patient experience of tactile massage after stroke

Abstract Aim The aim was to evaluate emotional experiences of gentle skin massage, combined with regular rehabilitation in patients shortly after being diagnosed with stroke. Design A randomized study with two groups: standard individualized rehabilitation and tactile massage for 20 min three times per week (max nine times) or individual standardized rehabilitations. Methods This study applied a qualitative approach using semi‐structured questions to evaluate experiences of receiving tactile massage among patients with first‐time‐ever stroke. The interviews lasted between 6–25 min and analysed using manifest content analysis. Data was collected between 2015‐2017. This study applies to the COREQ checklist. Results Eight patients >18 years of age participated. The participants experienced emotional worries especially during the night hours affecting their sleep negatively. Receiving tactile massage was reported to relax and to ease worries and anxiety momentarily, during the session and for a longer period. The results also show that physical touch generates feelings of closeness. The findings will be presented in two categories: Human touch and The future.


| Design and methods
To enhance the quality and transparency of this study, the COREQ checklist was applied.
This qualitative interview study used convenient sampling and including eight patients. Patients admitted to a specialized neurological rehabilitation clinic meeting the inclusion criteria and giving their informed consent were randomized to either (a) regular rehabilitation + TM or (b) regular rehabilitation alone. Analysis was performed using manifest content analysis (Graneheim & Lundman, 2004).
Convenience sampling was applied including four participants in each group (TM and control). Inclusion criterion: adults ≥65 years of age with first-time-ever stroke, admitted to one rehabilitation unit, within the time frame of 30 days after stroke, able to understand and communicate verbal and written Swedish. Exclusion criteria: patients with MOCA ≤ 16 (Montreal Cognitive Assessment (MoCA) version 7.0; Nasreddine et al., 2005) and/or with severe aphasia affecting their ability to give informed consent and to participate. The study was conducted at one specialized inpatient rehabilitation unit with 23 beds. Patients in need of rehabilitation due to neurological disorders, including stroke were admitted to the ward. Patients with stroke were admitted directly from the acute stroke care units in Stockholm. The length of stay for patients in stroke rehabilitation was 17-21 days in the ward followed by referral to primary care rehabilitation by regional neuro-teams. Each patient together with the rehab team (including physiotherapist, occupational therapist, physician, Registered Nurse (R.N.), speech therapist, neuropsychologist, nutritionist, social worker) designed a rehabilitation plan according to the individual needs. Nursing staff and physicians were available at all hours while the rest of the rehab team was available 5-6 days per week.
The clinical research team included one physician and one RN both with extensive experience of research and intervention studies, along with one additional RN and two assistant nurses. The study included training sessions with the TM expert in hand and foot massage prior to the patient inclusion to confirm intra-and inter-person reproducibility of the TM routine given by the team members. The extent of the training was 4 × 4 hr including a theoretical part describing touch and its neurophysiological effect followed by practical training sessions giving/receiving hand-and foot massage. All staff were informed about the study prior to its start, at regular staff meetings. For inclusion to be successful, it was important to secure that staff were informed about the study and understood the study protocol. Ward supervisors and senior physicians were informed separately as they were involved in the daily inclusion process with the research team.
To secure that the TM addition and study protocol could be carried out for all study participants without interfering with the daily schedule of training sessions, the research team conducted the study during afternoon and evening hours (2.30 p.m.-9 p.m.), except for Fridays (11 a.m.-7 p.m.). A written structured manual guided the research team through the study protocol and working shift. During the afternoon study, staff identified new admissions, gave verbal and written information and collected written consents. If a patient gave informed and written consent to participate, he/she was randomized to one of the two groups by a blind lottery approach conducted by the research team. The patients were then informed about what group they should attend (one patient withdrew his/her participation). This procedure was followed by the study staff handing out baseline questionnaires. A time schedule was decided and later, after the evening meal the participants were introduced to intervention or rehabilitation alone. Questions about their sleep were registered before and after each TM session and at equivalent time points also in the rehabilitation alone group. This was repeated three times a week (Mon-Wed-Fri) for 3 weeks (nine sessions).
Group 1. TM and regular rehabilitation. Participants in this group followed their schedule of daily rehabilitation (individual and group rehab training) and in addition chose between hand or foot massage (20 min). Light touch massage was applied employing slow strokes and light pressure using structured movements. Light scented vegetable body oil (Pomegranate Regenerating Body oil and Sea Buckthorn Body oil, Weleda © ) was used to minimize skin friction.
The participants received the TM lying down in their own hospital bed. During the massage study, staff were informed not to initiate a conversation but answered questions if posed during the massage session.
Group 2. Regular rehabilitation alone. Participants in this group followed their schedule of daily rehabilitation (individual and group rehab training) alone without any additional intervention.
Minimal Insomnia Symptom Scale (MISS) (Broman, Smedje, Mallon, & Hetta, 2008), blood pressure and heart rate were registered prior to and after the TM intervention, while only once after resting for 20 min in the control group and will be presented in a separate report.

| Analysis
Individual tape-recorded interviews were conducted at a time convenient for the patient on the last day of being included in the study. Semi-structured questions were posed: "Can you describe how you feel today?" this was followed by; "What made you want to participate in this research study?" "What are your experiences from receiving massage?" "What did you think when you weren't randomized to the massage group?" as well as follow-up questions.
The interviews lasted between 6-25 min and were conducted by a senior researcher. The interviews were transcribed by a professional transcriber not involved otherwise in the study and analysed using Graneheim and Lundman (2004) approach to manifest content analysis. The analysis was conducted by the authors until consensus was reached.

| Ethics
Patients included in the study received verbal as well as written information about the study at the time of admission to the ward.
The persons that gave their informed consent received a copy of the written consent along with telephone numbers and e-mail addresses to the research team. All were informed that they could at any time and without further explanation withdraw from participating in the study without affecting the regular rehabilitation care. The study was approved by the Ethical Review Board in Stockholm, Sweden (reference number: Dnr 2015/1627-31).

| RE SULTS
Eight patients over the age of 65 (five women and three men) at one stroke rehabilitation unit participated in the study. The main results show that participants in both groups experienced emotional worries especially during the night hours mostly affecting their sleep negatively. Participants in the massage group did express that the massage was helpful to relax and to ease worries and anxiety momentarily, during the massage session and in some cases for a longer period of time. The aim of this study was also to evaluate other aspects of receiving massage, here described as closeness from a person other than family members.
The results show that the participants wished to participate in the study as they had hoped to be selected to the TM group. Their pre-conceived notion of massage was for some from previous experiences, while others expressed an understanding of it being nice and adding value to life. Another reason for choosing to participate was curiosity and the possibility to contribute to research in stroke rehabilitation: I found it enjoyable, but at first I got worried that they would need to take a lot of blood samples, but they did not (women 1 TM) Well, If I had been selected for massage, I would have been happy, but I wasn't (male 2 Control group) The findings will be presented in two main categories: Human touch and The future.

| Human touch
This category will be described in two subcategories: The importance of touch and Inner worries. The importance of touch is emphasized as well as a need for touch but also its implications for patients in rehabilitation after stroke.

| The importance of touch
Human touch in general was described as important and included different dimensions by the participants in the massage group. The predominating experiences were feelings of comfort, calmness and a sense of respite. The experience of massage was also described as intense and generating peacefulness. Another aspect brought forward by the participants was the dimension of human touch in relation to feeling lonely. Touch was described as a resource that varied in intensity depending on one's life situation, with or without family members and close friends. Even though living in a tightly knit family the experience of touching each other was for one person described as brief and temporary: I believe that many patients that live alone, experience touch of another human being as rare, a rare One patient in the control group did not agree to be tape record, therefore a written statement was undertaken.
I have previous experience from working as a beautician and with complementary therapies and am well aware of the importance of touch. I was disappointed when I was not picked for the massage group (women 2 Control group)

| Inner worries
Shared by all, participants described their feelings of worry or anxiety and that it affected their night sleep. The participants' perception was that most fellow patients sensed the same feelings: Most patients here are tense and worried. And I know as there are many that need to take a pill to be able to sleep, even if I myself haven't yet (women 1 Control group) The massage was described as a possible resource to ease their worries, and even in the control group of participants not receiving massage, it was thought to contribute positively. I did not get massage myself, but I have heard from others that it is calming and peaceful (male 2 TM) For those who received massage, it was described as a respite from worries and anxiety. It was illustrated vividly as exemplified by the fol-

| The future
In this category, the participants described their thoughts about the future life following stroke and how it would affect their time ahead.

| D ISCUSS I ON
The results show that being considered for and taking part in a research study was experienced as positive by the patients even though they were newly diagnosed with a first ever stroke. The research team had no previous experience of introducing tactile massage to this group of patients and was therefore positively surprised by the patients' willingness to participate in the study. Taking part in the study was described as gaining positive attention, generating feelings of being special. This agrees with Riet, Dedkhard, and Srithong (2012) who described the importance of listening to patients' own narratives regarding feelings and experiences during their rehabilitation process as means of the convalescence process (van der Riet et al., 2012b). It became clear that all participating patients had needs to narrate and to tell "their story" about how they experienced and handled their illness.
Patients in the massage group described human touch and the closeness and warmth of another person as important. This included feelings such as being described by van der Riet et al. (2012b) and here uttered as generating comfort, calmness, respite, intensity and peacefulness. In neurophysiological research, Bjornsdotter, Morrison, and Olausson (2010) and Loken, Wessberg, Morrison, McGlone, and Olausson (2009) could identify specific touch receptors in hairy skin, C-tactile nerves associated directly to parts of the brain connected to feelings (Bjornsdotter et al., 2010;Loken et al., 2009). Their studies show that slow and gentle touch and stroking of the skin activates the C-tactile nerve fibres facilitating emotions of well-being (Morrison, Loken, & Olausson, 2010).
Furthermore, it is known that gentle skin touch releases oxytocin with known positive effects on muscle tension, pain and relaxation (Ellingsen et al., 2014;Morrison et al., 2010).
The massage offered a deeper emotional dimension than what the patients had expected. For some, daily touch of another person had previously not always been present, as they lived alone. Yet, patients that was part of a family did not always consider touching to be present either, depending on their personal situation. In some cases, the patients described touching a family member as both brief and temporary. The experience of how it felt to receive gentle tactile massage was therefore an important insight into what touch could implicate. In rehabilitation, the multi-professional team of staff play a pivotal role. van der Riet, Dedkhard, and Srithong (2012a) emphasize that nurses should use a holistic approach when caring for patients with stroke in their recovery. This is in line with Hankey who suggests that experiencing stroke, indeed is related to suffering and as such a frightening experience (Hankey, 2017). This is also in agreement with other studies suggesting that patients suffering from stroke experience complex feelings of anxiety regarding their disabilities and future consequences (Alimohammad et al., 2018;Harrison & Field, 2015;van der Riet et al., 2012b). Alimohammad et al. (2018) showed changes in patient anxiety following sessions of hand or foot massage after stroke, suggesting that massage as means of relaxation could be helpful to ease the patients suffering. This is in line with Golding et al. (Golding, Fife-Schaw, & Kneebone, 2017Golding, Kneebone, & Fife-Schaw, 2016) and their studies, as they introduced relaxation techniques by a self-help programme. The results show positive effects as it reduced anxiety in stroke survivors, both short and long term. This is comparable with our results, as the patients experienced anxiety regarding their own health and outlook during their rehabilitation. For most, but not all, it had a negative effect on their night sleep. Patients received medication to sleep, but later at night woke up and found it difficult, fearful and hopeless to go back to sleep again and thereby becoming a problem. However, during the massage sessions, the patients described how they could relax and be at peace.