Perceptions and ideas of critically ill patients, their family and staff members regarding family participation in the physiotherapy-related care of critically ill patients: a qualitative study

ABSTRACT

Background

Involvement of families in physiotherapy-related tasks of critically ill patients could be beneficial for both patients and their family. Before designing an intervention regarding family participation in the physiotherapy-related care of critically ill patients, there is a need to investigate the opinions of critically ill patients, their family and staff members in detail.

Objective

Exploring the perceptions of critically ill patients, their family and staff members regarding family participation in physiotherapy-related tasks of critically ill patients and the future intervention.

Methods

A multicenter study with a qualitative design is presented. Semistructured interviews were conducted with critically ill patients, family and intensive care staff members, until theoretical saturation was reached. The conventional content method was used for data analyses.

Results

Altogether 18 interviews were conducted between May 2019 and February 2020. In total, 22 participants were interviewed: four patients, five family members, and 13 ICU staff members. Six themes emerged: 1) prerequisites for family participation (e.g., permission and capability); 2) timing and interactive aspects of engaging family (e.g., communication); 3) eligibility of patients and family (e.g., first-degree relatives and spouses, and long stay patients); 4) suitability of physiotherapy-related tasks for family (e.g., passive, active and breathing exercises); 5) expected effects (e.g., physical recovery and psychological wellbeing); and 6) barriers and facilitators, which may affect the feasibility (e.g., safety, privacy, and responsibility).

Conclusion

Patients, family members and staff members supported the idea of increased family participation in physiotherapy-related tasks and suggested components of an intervention. These findings are necessary to further design and investigate family participation in physiotherapy-related tasks.

KEYWORDS:

• Intensive care
• family
• involvement
• physiotherapy
• rehabilitation

Introduction

An admission to an Intensive Care Unit (ICU) is often associated with a decrease in physical function and the emergence of ICU acquired weakness (ICU-AW) (Hermans and Van den Berghe, 2015; Parry and Puthucheary, 2015; Piva, Fagoni, and Latronico, 2019). Survivors of critical illness can experience new or worsening impairments in physical, cognitive and/or mental health (Rawal, Yadav, and Kumar, 2017). Early physical rehabilitation in the ICU can improve patients’ physical function, shorten ICU length of stay, and may reduce adverse psychological effects (Needham et al., 2010; Pandharipande et al., 2017; Parker, Sricharoenchai, and Needham, 2013). The psychological impact of an ICU admission is not limited to the patients, but may affect the mental health of their family members as well (Alfheim et al., 2018; Alfheim et al., 2019; Davidson, Jones, and Bienvenu, 2012; Garrouste-Orgeas et al., 2010; McAdam et al., 2012; Pochard et al., 2001).

Involvement of family in the ICU has the potential to optimize diverse outcomes. It can be beneficial for patients, family members and staff members (Al-Mutair, Plummer, O’Brien, and Clerehan, 2013; Haines, 2018; Kean and Mitchell, 2014; Kynoch, Chang, Coyer, and McArdle, 2019; Liput, Kane-Gill, Seybert, and Smithburger, 2016; McKiernan and McCarthy, 2010; Olding et al., 2016). It has been suggested that engaging families could humanize the patient illness and recovery experience, might enhance psychological well-being for both patients and family, could decrease the strain of families during a crisis, and might improve family member’s ability to cope with the patients’ situation by giving them a purposeful role (Al-Mutair, Plummer, O’Brien, and Clerehan, 2013; Haines, 2018; Kean and Mitchell, 2014; Kynoch, Chang, Coyer, and McArdle, 2019; Liput, Kane-Gill, Seybert, and Smithburger, 2016; McKiernan and McCarthy, 2010; Olding et al., 2016). In addition, active involvement can support staff by utilizing relatives as a supporting resource to deliver care outside of constrained time that staff members have (Haines, 2018). Since both early mobilization, physical exercise and family engagement were found to be beneficial in the daily care of critically ill patients (Pun et al., 2019), family participation in physiotherapy-related tasks could be promising (van Delft, Valkenet, Slooter, and Veenhof, 2021). Physiotherapists treat patients usually once a day due to constrained time, nurses often lack the time to help patients with their exercises or mobilization, and family is often not consulted to assist during the exercises, while they may be present at the bedside (Haines, 2018). Interventions aiming to increase family participation in physiotherapy-related tasks could, in addition to the previous mentioned benefits, optimize patients' physical function by increasing the frequency and thereby impact of physical rehabilitation. A recent review (van Delft, Valkenet, Slooter, and Veenhof, 2021) and viewpoint (Haines, 2018) demonstrate that there are positive attitudes among patients, family members and staff members toward family participation in physiotherapy-related tasks with critically ill patients. Haines thinks that family members can be engaged in many practical low-cost, high-value rehabilitative activities of critically ill patients (Haines, 2018). However, limited research has been done into the development, feasibility and effectiveness of interventions regarding family participation in physiotherapy-related tasks (van Delft, Valkenet, Slooter, and Veenhof, 2021).

The Medical Research Council (MRC) framework can be used for developing and implementing complex interventions (Craig et al., 2008). The first phase of this framework is the development phase. The first step of this phase was to identify what is already known about family participation physiotherapy-related tasks (van Delft, Valkenet, Slooter, and Veenhof, 2021). The next step is to identify and develop a theoretical understanding of the likely process of change. In this stage, it is crucial to gain knowledge on the area of concern, to get an understanding of the prospective users and their context, and determine which values and requirements the different stakeholders deem important to include in the further design of the intervention (Craig et al., 2008). Before further designing an intervention regarding family participation in the physiotherapy-related care of critically ill patients, there is a need to investigate the opinions of ICU patients, their family and staff members in detail. It is important to examine when, how and in which physiotherapy-related activities that family could and would like to be involved. Therefore, to assess the feasibility of an intervention for family participation in physiotherapy-related tasks of critically ill patients, the aim of this study was to explore the perceptions and ideas of patients, their family and staff members regarding this topic and the future intervention.

Methods

Design

This is a multicenter study, using a descriptive qualitative design. This study is the second step in the development phase of the MRC framework (Craig et al., 2008). The first step in the development phase was a systematic review to summarize the existing evidence about family participation in physiotherapy-related tasks of critically ill patients (van Delft, Valkenet, Slooter, and Veenhof, 2021). The method used in this study is based on the qualitative content method (Hsieh and Shannon, 2005), using individual semistructured interviews with open-ended questions. For reporting this study, the consolidated criteria for reporting qualitative research (COREQ) checklist (Tong, Sainsbury, and Craig, 2007) were used.

Setting

To provide diversity allowing generalizability in terms of patient profiles, family experience and staff member opinions, this study was performed in an academic hospital, University Medical Center Utrecht (UMC Utrecht), and a non-academic community hospital, Diakonessenhuis (DH), which are both mixed medical-surgical adult ICUs. Unit one is a 36-bed medical, surgical, cardio, neuro transplant and trauma center. Unit two is a 12-bed medical surgical community ICU. The study protocol was assessed and approved by the local Medical Ethics Committee (study protocol # 18–842). Written informed consent was obtained from all participants of this study.

Participants

For this study, critically ill patients, family members, and ICU staff members were included for semi-structured interviews. Overall inclusion criteria for participation were the ability to speak Dutch and an age of 18 years or older. Patients had to be admitted to the ICU for more than 72 hours and be both verbally and cognitively capable to talk for 30 minutes, as assessed by the treating physicians. Regarding family members, only first-degree relatives and spouses (partners) of patients admitted at the ICU for more than 72 hours were included. Involved staff members were as follows: ICU nurses (formal relevant postgraduate training completed), ICU physicians (formal relevant postgraduate training completed), physiotherapists, occupational therapists, and managers working in the ICU for at least 4 months. Staff members were purposively sampled for semistructured interviews, based on discipline and years of work experience. The inclusion of patients, family and/or staff members continued until nothing new was heard in two consecutive interviews and theoretical saturation, described as the point where no new themes other than the one already existing obtained from the data, was reached.

Study procedures

Patients and family

Eligible patients and family members received verbal and written information about the study. In study unit one (UMC Utrecht), the first author approached potential participants face-to-face, provided information, answered questions, and asked for participation. In study unit 2 (DH), the enrollment was performed ditto by a research assistant (PT, BSc). Both researchers were female and also work as physiotherapists in the ICU, resulting in the possibility that there was a prior relationship to the patient and/or family as part of clinical care. The interviews with patients and/or family members were conducted at the end of the patients' ICU stay or within the first two days after discharge from the ICU. The interviews had a maximum of 30 minutes and took place in a quiet room according to the participants’ wishes (i.e., family room or meeting room in the ICU or in the patient room).

Staff members

All ICU staff members that met the inclusion criteria received an e-mail from the first author with information about the study and the question to participate in this study. Responses were selected based on discipline and years of work experience, and subsequently, an interview date and time was set by e-mail. Since the primary researcher also works as a physiotherapist at UMC Utrecht, it is possible that there was a professional relationship with staff members established prior to study commencement. The interviews had a maximum of 30 minutes and took place in an office in the ICU, privately.

Data collection

The semistructured interviews were guided by a topic list with open-ended questions: one for the patients, one for family, and one for staff members (Appendix A). The topic lists were developed by the first author (LvD), who had done a course for qualitative research and conducting interviews, and reviewed by the research team. All interviews were conducted by the first author and were audio-recorded and transcribed verbatim. Participants were interviewed in random order. In addition to the interview data, the following data were collected for patients: age, sex, reason for ICU admission, length of ICU stay at the moment of the interview, and cause of ICU admission. Data collected for the family members were age, sex, relationship to the patient, and cause of ICU admission of the patient from his/her family member. For staff members, age, sex, profession and the number of years of working experience on the ICU were collected. To warrant the quality and consistency of the interviews, a second investigator (CV) listened back the first three interviews and evaluated and discussed these findings before continuing with the interviews.

Data analyses and trustworthiness

The conventional content approach was used for analysis (Hsieh and Shannon, 2005). The objective of this method is to systematically transform a large amount of text into a highly organized and concise summary of key results. Text was read verbatim to interpret its meaning and to start dividing up the text into smaller parts, called meaning units, before starting with coding. Coding involved assigning a “label” to a segment of text (the meaning units) to represent the meaning derived from that text. After this initial coding phase, common codes were sorted for the identification of (sub)categories. Using the process of abstraction, all the codes were categorized and categories were combined until all interview data was reduced to a few main categories, which are in this study labeled as major themes. The final analytical phase resulted in a narrative story line that accounted for the major themes and explained the research question. NVivo version 12 (QSR International Pty Ltd, Melbourne, Australia) was used for all analyses.

The following strategies were incorporated to enhance credibility. The first three interviews were independently coded by two researchers (LvD and KV). To create consistency and equality in the data analysis, codes were discussed and subsequently categorized and themes were selected. After creating consensus about the codes, categories and major themes, the following interviews were analyzed by one researcher (LvD), and when found, appropriate new codes, categories and major themes were formulated until no new themes were obtained. To assure rigor and trustworthiness, finalized analyses were checked and suggestions were provided by a second researcher (KV) before the final thematic analysis of all qualitative data was produced. Consecutively, a consensus meeting was organized with two other researchers (CV and AS) to discuss the final categories and themes. In order to assure participant validation, a member check was performed at the end of each interview by providing a verbal summary of the findings, and by performing a member check of the final findings with two interviewed staff members.

Findings

Sample characteristics

Altogether 18 interviews were conducted between May 2019 and February 2020 of which four were with a patient and their family member simultaneously. In total 22 participants were interviewed; Four patients, five family members, and 13 ICU staff members (Table 1). The patients were mostly female (75%) with a mean age of 61 (Standard Deviation (SD) 6). Most family members were male (60%) and partner (80%) of the patient, with a mean age of 57 (SD 12) years. The majority of the interviewed ICU staff members were female (77%) and nurse (46%), with a mean age of 44 years (SD 12). Table 1 provides detailed information of the participant characteristics. In one interview, the recording equipment failed, so field notes were made.

Table 1. Characteristics of the interviewed participants.

Characteristic	Critically ill patients n = 4	Family members n = 5	Staff members n = 13
Sex; N (%) Female Male	3 (75) 1 (25)	2 (40) 3 (60)	10 (77) 3 (23)
Age; mean (SD)	61 (6)	57 (12)	44 (12)
Relationship to the patient; N (%) Partner Daughter	NA NA	4 (80) 1 (20)	NA NA
Days admitted to ICU; mean (SD)	33 (19)	30 (18)	NA
First ICU admission; N (%) Yes No	3 (75) 1 (25)	4 (80) 1 (20)	NA NA
Hospital location; (N%) UMC Utrecht Diakonessenhuis	4 (100) NA	4 (80) 1 (20)	8 (62) 5 (38)
Admission diagnosis; N (%) Lung transplant Heart failure Left ventricular assist device	2 (50) 1 (25) 1 (25)	NA NA NA	NA NA NA
Years of critical care experience; N (%) 1–5 years 6–15 years Over 15 years	NA NA NA	NA NA NA	6 (46) 2 (15) 5 (38)
Profession; N (%) Nurse Physician Physical therapist Occupational therapist Team manager	NA NA NA NA NA	NA NA NA NA NA	6 (46) 3 (23) 2 (15) 1 (8) 1 (8)
Duration of the interviews – minutes; mean (SD)	20 (2)	20 (2)	26 (5)

Main findings

Both patients, family members and ICU staff members supported the idea of increased family participation in ICU physiotherapy-related care and contributed to suggesting relevant components of an intervention. Six major themes emerged: 1) prerequisites for family participation; 2) timing and interactive aspects of engaging family; 3) eligibility of patients and family; 4) suitability of physiotherapy-related tasks for family members; 5) expected effects; and 6) barriers and facilitators, which may affect the feasibility (Figure 1). See Appendix B for a summary of quotations divided per major theme and Appendix C for a full overview of the major themes and (sub)categories.

Figure 1. Major themes brought up by the semi-structured interviews, regarding family participating in the physiotherapy-related care of ICU patients.

Prerequisites for family participation

The most frequently mentioned was that participation should be voluntary; family members must really want to get involved in the care of their loved ones.

Yes and therefore what is important, I think you should tell family that it is not a must! That it is allowed, but if you don’t want to, you don’t have to. And if you say later I don’t want it anymore, then that’s okay too. [ID 3, nurse]

In addition, the minority of staff members stated that also patients should agree, whenever possible. All staff members agreed that the ultimate responsibility regarding family participation should lie with the bedside nurse and/or physician. However, deciding which physiotherapy-related activities could be done by the family member should be decided by the physiotherapists, based on the patients’ physical condition. One team manager and nurse mentioned that, to guarantee continuity, it is important that most nurses support the program. Other prerequisites, which were often stated, were that family participation should always be an addition to normal physiotherapy care and that it must be tailored per patient, per family member, and per day.

But I think that it can differ greatly per patient or per case. And per day perhaps. But then I think as physio and nurse you have to communicate very good about it. [ID 16, nurse]

Timing and interactive aspects of engaging family

Staff members talked about the right time to appoint, offer and involve family. Most of them stated that family members should be allowed to participate when the patient is medically stable. Creating awareness about the possibility for family participation should start earlier, by naming the options for participation already in the first days of ICU admission. Furthermore, they thought that family participation may change over time. During the first phase of admission, family is likely to stay on the background more as they may be overwhelmed by the ICU environment and medical situation of their critically ill loved one. When patients become medically stable and the ICU environment becomes more familiar for family members, the readiness for family participation may increase.

Staff members find it challenging how to involve family, and two concepts were often discussed: the communication with family members and the way of offering. In the interviews, staff members agreed that the first contact with family members is best done by the nurses since they see them most often. It was suggested that if a family member wants to participate, the physiotherapist can subsequently approach them for further explanation and training.

I think that nurses are good point to start because they see the family members more often, even in the evenings when we are not there. So I think it is certainly useful but the nurses are also busy enough, so I think it is a nice task for physiotherapist to explain it to the family afterwards. But it is nice if nurses take the first step and the first contact and information [ID 6, occupational therapist]

All staff members decided that guidance of family is very important; it starts with clarification and clear instructions, followed by practicing the physiotherapy-related tasks together. In addition, they agreed that interim evaluation, supervision and feedback are crucial.

So that the physiotherapist really should do it the 1^st time together, and maybe also evaluate regularly with family and how they are doing or if they have questions. I don’t think you can just give a booklet about family participation, what can you do yourself, get started [ID 16, nurse]

Regarding the activities one offers to the family to participate in, staff members think that it is important to set boundaries in advanced and predefined activities in which family members can participate. The majority of nurses mentioned the option where family members can choose tasks they feel comfortable with.

Various options were mentioned about how to offer it (in which form) to the family. Participants agreed with something tangible instead of only verbally. Examples of forms that were named are a folder/booklet, a list/poster with activities, and notes in a patient dairy.

Eligibility of Patients and Family

Participants had a clear opinion concerning the eligible patients, in terms of patient groups where family is allowed to participate in physiotherapy-related tasks or not. Most staff members mentioned patients with a long duration of ICU admission (e.g., admitted more than a week) and/or weak (e.g., ICU-AW) patients who will enter a rehabilitation process after ICU discharge as target groups. A few nurses stated that family of all patients receiving physiotherapy should be involved. Staff members agreed that patients who should be excluded are hemodynamic unstable, septic patients and patients with “no touch policy” due to increased intracranial pressure. Staff members also mentioned the protocolled short-stay surgery patients for exclusion because they already have strict mobilization and physiotherapy protocols. In addition, some participants had doubts about sedated patients since they cannot give permission and are mostly still medically unstable.

Well I would like it if we do offer that, that it does not only have to be patients’ with a rehabilitation process, but also ordinary patients who are here longer, the long-stayers, e.g. people after neuro trauma or people after, whatever, you know them also, there it can really be an advantage. [ID 7, physician]

Regarding eligible family members, the interviewed participants mainly thought first-degree relatives (i.e., parents, children, brothers and sisters) and spouses/partners. Most frequently mentioned by patients, family and staff members, was the relationship between the family member and the patient. Not all family members should participate in physiotherapy-related tasks since they may have objections to become a caregiver. The difference between sons and daughters was mentioned by a patient, where her daughters wanted to help and her sons not. In addition, one physician stated that young people are more used to participate (“doing it together”) than the older generation (i.e., 70 and older).

Yes, I think that they see their mother mainly as a mother, and not, because as soon as something will happen here, my sons will also leave. My daughters-in-law stay, they don’t mind, but the kids, boys, are leaving. [ID 11, patient]

Suitability of physiotherapy-related tasks for family members

Many different activities were named by staff members, patients and family members themselves. Staff members thought that suitable physiotherapy-related tasks can vary daily, due to the changing situation and physical functioning of the patient. Concerning physiotherapy-related tasks, passive exercises/passive range of motion (ROM) for the prevention of contractures, active exercises to increase or maintain muscle function/strength, and breathing exercises (e.g., incentive spirometer) were mentioned most.

If people are good enough that you give them an incentive spirometer something where people often don’t think of themselves to practice. That you say to the family, let them practice with that incentive spirometer, even if they only say it once, then it is already kind of, you already have a profit there. I don’t think about it every hour either … [ID 3, nurse]

In addition, nurses often considered massage as a possible task for family. Regarding mobilization out of bed, opinions were divided. Family members indicated that they would like to help with this activity, but most staff members consented as not all family members may be skilled to help. Letting them help will then result in more workload for the nurse of physiotherapist and possible patient unsafety. In addition, staff members think that mobilization should not be performed by family alone, but always together with staff, ensuring safety.

That may also depend on how it goes and how the family member helps. Someone can of course really help with mobilizing, but someone can of course also be too much on top of it, and then working against you. [ID 5, physiotherapist]

Expected effects

Several potential effects were identified. Often cited was the expectation that involvement of family members might reduce stress and anxiety for both patients and family members.

I think for the group thinking it’s too scary, who thinks everything is exciting/stressful, that you can lower the threshold (when they participate). If you notice gosh there is still just the one you love, there in bed, touching him, movements are possible. You can really mean something to him, that it is also very nice for their psyche, certainly. [ID 1, nurse]

Staff members (i.e., nurses, physiotherapist, physician, and team manager) mentioned that for patients, it might also improve their physical recovery and even facilitate discharge, when the frequency of physical exercise moments would increase.

Well maybe it is, in transferring a patient earlier (discharge ICU). I think that in the end, it might perhaps advance in the speed of the patient’s physical recovery. [ID4, team manager]

In addition, a few long-term effects were mentioned. Staff members expected the program to be valuable to mentally and physically prepare family and patients for the rehabilitation phase after ICU admission (i.e., the next ward, rehabilitation center, or at home).

Regarding the potential effects for staff members, opinions were divided. The majority of nurses indicated that it may save them time, but that they would only benefit from this in a later stage of the patients’ admission and that this would depend on the family member. The minority of nurses stated that they expected that family participation has no direct added value for them, in the sense that they do not have to do anything less when the family is participating in physiotherapy-related tasks.

There were also negative effects mentioned. Half of the nurses named the fear of family members participating too much, which might interfere with the patient or nurses wishes. Involving family too much could be counterproductive because patients might be going to rebel against their family members. Another unwanted consequence, which was indicated by nurses, is that family members could become overconfident and start doing things themselves they are not skilled in, resulting in unsafe situations.

Barriers and facilitators which may affect the feasibility

The relationship between the family member and the patient could be a factor of influence. Not all family members would be willing to participate in physiotherapy-related tasks and patients may not appreciate the help of a family member. The most important facilitator for family participation during ICU admission was considered caregiver by the family member before ICU admission.

Staff members often mentioned that the family may find it scary to perform physiotherapy-related tasks with the patient because of the many lines, equipment and alarms in the room. However, the interviewed family members did not name that.

Sometimes you are a bit afraid that you are touching the wrong line, but it is not that I really have the feeling that it is very scary, no. [ID 11, partner]

Besides, staff members agreed that not all family members are capable of participating physically and/or emotionally. Since patients’ safety is essential, they think it is necessary to criticize family members’ capability before they start participating in physiotherapy-related tasks. As for patients, they usually wear few clothes during their ICU admission jeopardizing patients’ privacy. However, this was mostly mentioned by staff members and not by patients themselves.

You have some family members who understand it very well, know exactly when you tell them what to do and stick to that, and you have families who are there and the moment an alarm starts they drop everything. Because then there will be a beep and then all at once “oh shit there is something going on”, then it is of no use to you, then you are actually guiding that family more than you monitoring your patient. [ID 3, nurse]

Finally, there were diverse barriers for staff members. Nurses stated that it could increase the workload of staff members because the assessment for capability, instructions and personal training may take time. Responsibility was also indicated by the majority of staff members since staff members are ultimately responsible for complications. One ICU team manager mentioned behavioral change as a possible barrier in the beginning because there is often resistance against something new.

I think the privacy of the patient and the safety. And especially with mobilization, that you can do that well, that safety can be guaranteed. If you had to do it normally with two nurses (transfer bed-chair), then not! [ID 16, nurse]

Discussion

This qualitative study on family participation in the physiotherapy-related care of ICU patients can be considered as an important step of the development phase of the MRC framework for developing and implementing a complex intervention (Craig et al., 2008). Findings of the current study demonstrate that patients, their family members and ICU staff members support the idea of increased family participation in the physiotherapy-related care of critically ill patients, but believe that diverse important requirements must be included in the further design and investigation of an intervention in this field.

The most important prerequisite seems to be that family participation should always be voluntary since not everyone wants to participate in the care. Current study results correspond to earlier studies reporting on family participation in ICU care, which also mentioned that the kind of relationship, younger age, non-European descent and previous ICU admission for their family member may influence the willingness to participate in patient care (Azoulay et al., 2003; Engström, Uusitalo, and Engström, 2011; Hetland, McAndrew, Perazzo, and Hickman, 2018).

Involving families in physiotherapy-related tasks raises a number of concerns and possible barriers for the feasibility, which are comparable with barriers reported in previous studies focusing on family participation in ICU care; patient safety and privacy, family capability, and responsibility were often mentioned (Azoulay et al., 2003; Engström, Uusitalo, and Engström, 2011; Hetland, McAndrew, Perazzo, and Hickman, 2018; Wong et al., 2019). Involving family in physical activities may risk adverse events such as accidental extubating or catheter removal (Wong et al., 2019). Therefore, it is of high importance that family receives structured information, training before participation, and evaluation moments (Azoulay et al., 2003; Hetland, McAndrew, Perazzo, and Hickman, 2018; Kydonaki, Kean, and Tocher, 2019; Wong et al., 2019). In addition, family members' anxiety to participate were also cited as possible barriers in previous studies (Hetland, McAndrew, Perazzo, and Hickman, 2018; Wong et al., 2019). Besides patients’ safety, patients’ privacy has to be taken into account as well. However, this may be more important when family is participating in nursing tasks such as washing (Engström, Uusitalo, and Engström, 2011), which might have higher thresholds for family and patients than rehabilitation-related tasks. In addition, not all family members are likely to be capable of participating (Hetland, McAndrew, Perazzo, and Hickman, 2018; Kydonaki, Kean, and Tocher, 2019; Wong et al., 2019). This includes not only personal qualities of the family member such as functional factors (e.g., physical strength), psychological and emotional factors (e.g., willingness to be involved and emotional stability), and knowledge (e.g., disease and learning ability) but also the relationship between the family member and the patient (Hetland, McAndrew, Perazzo, and Hickman, 2018). Staff members believe that it is important to maintain control over the situation and patient, since they are ultimately responsible (Hetland, McAndrew, Perazzo, and Hickman, 2018; Kydonaki, Kean, and Tocher, 2019). It can differ per patient, per family member and even per day, whether participation, and which activities, is possible to execute. Therefore, there is a need for effective communication about rules and expectations (Hetland, McAndrew, Perazzo, and Hickman, 2018; Kydonaki, Kean, and Tocher, 2019; Wong et al., 2019).

Multiple possible beneficial effects were mentioned in this study. Participation in physiotherapy-related tasks may generate a feeling of usefulness for family members, may decrease stress and anxiety for both patients and family, and may make patients feel more safe. These expectations are consistent with previous research investigating the effects of involving family in different types of care of critically ill patients (Amass et al., 2020; Black, Boore, and Parahoo, 2011; Skoog, Milner, Gatti-Petito, and Dintyala, 2016). Just as important, it may also promote physical recovery by increasing the frequency and thereby impact of physical rehabilitation, although this has not yet been investigated before. Many possible physiotherapy-related activities were indicated in the interviews, from relatively passive (e.g., PROM and massage) to active (e.g., active limb exercises, breathing training, and mobilization). Before developing an intervention and deciding which activities family members are allowed to perform, the goal of the intervention and clinical outcomes must be well-defined. If the intention is to increase physical functioning and promote physical recovery, then the emphasis should be on active physiotherapy-related tasks: active (limb) exercises, breathing exercises and/or mobilization. If the goal is only to reduce anxiety of families and patients or to make family feel useful, then passive physiotherapy-related tasks (e.g., massage or range of motion) may already be sufficient.

A major strength is that this is the first study focusing on physiotherapy-related care only. Another strength is the diversity of participants, since most of the previous qualitative exploration studies focusing on family participation in ICU care included staff members and/or family members only (Azoulay et al., 2003; Engström, Uusitalo, and Engström, 2011; Hetland, McAndrew, Perazzo, and Hickman, 2018; Smithburger, Korenoski, Alexander, and Kane-Gill, 2017; Wong et al., 2019). In the present study, critically ill patients, their family members and staff members were interviewed, resulting in valuable information from all stakeholders to be involved in family participation in physiotherapy-related tasks. This enables a better understanding of experiences, concerns and motivations, which is part of the first steps of the development phase of the MRC framework for developing and implementing a complex intervention (Craig et al., 2008). A limitation of the present study is that it was conducted right before the COVID-19 pandemic. Due to the current pandemic, parts of the ICU care have been changed. For example, at this moment the visitation of loved ones in critical care has been minimized, resulting in fewer possibilities for family involvement. Additionally, the perceptions regarding family participation in the ICU might have changed due to the pandemic, whereby the findings of this study might be less applicable in the current pandemic and post-pandemic world. Future studies must take this into account and will experience the possible consequences. In addition, due to the COVID-19 crisis, the interviews had to stop early, and therefore, fewer interviews could be done with patients and family members in study center two. To improve the distribution between the two hospitals and participants, a few more interviews were planned in center two, but these were redundant because theoretical saturation had already been reached in center one. Another limitation is the fact that the researchers who approached the participants also worked as physiotherapists in the ICU, resulting in the risk of selection bias. Besides, for the sample inclusion of patients and their family, no prior selections in characteristics (e.g., gender, diagnosis, and admission duration) were made. This lack of purposive sampling could have influenced the credibility of this sample and generalizability of the results.

In conclusion, both patients, their family and staff members were found to have a positive attitude toward family participation in physiotherapy-related tasks and to recognize the added value of an intervention. However, the development of an intervention in this field is of high complexity and diverse requirements should be taken into consideration in the design and implementation. The goal of the intervention must be clearly defined before selecting the activities for family to participate in. Besides, the practical approach is challenging and influenced by diverse possible barriers and facilitators to keep in mind. Following steps are to merge these results and produce and test prototype(s). Since this is the first study focusing on this specific topic, a proper pilot study is needed to thoroughly evaluate the feasibility of an intervention to increase family participation in (active) physiotherapy-related tasks. Following the MRC framework, a pilot study is necessary to collect input to further design the final intervention before conducting a large-scale implementation and effectiveness study (Craig et al., 2008). When family participation in physiotherapy-related tasks of critically ill patients seems to be feasible, even in the postpandemic world, the effectiveness must be evaluated on relevant clinical outcomes.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The author(s) reported that there is no funding associated with the work featured in this article.

Appendix A.

Topic lists semi-structured interviews

Table

Staff members Introduction questions (5 min)
Topic	Main question
General feeling and opinion about family participation in the ICU	- How long have you been working in the ICU? - What do you think about family participation in the ICU? What’s your opinion on this?
Key questions (15–20 min)
Topic/part	Main questions	Sub-questions/sub-topics
Rehabilitation and physiotherapy in the ICU	-What do you think about physical rehabilitation in the ICU? - Could family members participate in this?	- Physiotherapy - Occupational therapy -How do you see the role of family members in this?
Early mobilization in the IC	- What is your opinion about early mobilization?	-Do you think patients get out of bed as soon as possible? And often enough?
Family Centered Care	- What does Family Centered Care mean to you?	Can you give examples of family centered care in this ICU?
Feelings family members in the ICU	-Do you get to see how family members feel during the ICU admission of their loved one?	Can you give an example of this? Can you explain this?
Involving family members in daily care in the ICU	-What do you think of the idea that family is allowed to participate in certain parts of daily care in the ICU? - Do you think that there is a need from the family (and patient) to be involved in the care?	-Why or not a good idea? -What do you see them doing, for example? And why that?
Participation in physical rehabilitation/physiotherapy	-What do you think of the idea that family is allowed to participate in certain parts of physical rehabilitation/physiotherapy care?	-Why? -What do you see them doing, for example? And why that?
Intervention to increase family participation	What is your opinion about an intervention to increase family participation in physiotherapy related care?	Explain? Why?
Who → Eligibility of family members and patients	-Who could we involve? * All family members * Only after e.g. week in the ICU? * Only family members who want to or every one? Do you have an opinion on this? Permission?	-Which family members -When is it and when not? inclusion/exclusion criteria (duration of admission, medical situation, etc.)
Why involve family/purpose of it	-What could be the purpose for you to have family participating in physical rehabilitation care? -Outcome measure (effect): patient mental and physical benefit, family mental processing, workload nurses etc.	- Who would help? Need for? - Do you think it helps the family if family contributes to the care? - Do you think it has a purpose for the patient? What? -Can it relieve staff members? How then?
Inventory where family could help – participate in?	-What would you like family to contribute/do? What tasks could they perform? Or help? -Why and when one does and why not? -What activities are suitable?	Examples include: -Help mobilize out of bed -Assist in physical practice in bed or in the chair - Helping with lung exercises -Passive joint through-movement - Massaging lower leg/ankles -Helping with food/drink/washing - Speak and do cognitive exercises together
When should the intervention be offered? When do they want to and/or are they allowed to participate?	-Who and when would family want to participate? When is it be possible to carry out physiotherapy related tasks, offer the intervention? - Difference long or short-term ICU patient - What should we take into account?	-Then why? -Why not sooner or later? - Long-term admitted patients vs briefly admitted patients?
How should we offer it, how can family participate/ be involved, how should the intervention look?	-How do you think family members want to be involved? Approach. - Idea about an intervention, or how we should implement it in? How it should look and be developed?	- What kind of intervention? - 1/1 guidance, or via a video or app? - e.g. a participation menu, a rehabilitation information and exercise guide, or via an app.
Approach/facilitation	- What do you think is needed to facilitate it? (what do you need for this) - And what do family members need to participate, what steps have to be taken before the participation can start? - Behavior change techniques	- How do we approach them? - How are we going to involve them? - What steps of involvement? o Invite → how? o Educate → how? o Support → how?
Feasibility and possible barriers/facilitators	-What factors can influence family participation and the feasibility of the intervention? - Barriers and facilitators	-Family fear of lines etc. -Time and space for family guidance - Safety - etc.
Summary (5 min)
Topic	Main question
Summary	- Is the summary adequate? - Are there any aspects that were not discussed in the interview?
2. Family members
Introduction questions (5 min)
Topic	Main questions	Sub-questions
General feeling and wishes/needs	- Do you visit often? -What does this period do to you? -Are there certain wishes and/or needs that arise with you during this period?	- Can you tell us anything about your relationship with the patient lying here? - Is it the first IC admission? - Have you visited the ICU before? - How do you feel?
Key questions (15–20 min)
Topic/part	Main questions	Sub-questions/sub-topics
Opinion and needs regarding the involvement of family in the daily care in the IC/Family Centered Care	-Do you visit often? -Are you already involved in the direct care of the patient? - Are there certain wishes that you have?	-If so: What are you involved in? How were you approached for this? -If not: Would you like to help in the care of your family member?
Involving family members in daily care in the ICU	-What do you think of the idea that you are allowed to participate in certain parts of the daily care in the ICU of your loved one? - What and how do you see that in front of you?	-Why or not a good idea? -What are your ideas that family members could do/help? -What would you like to do, for example? And why that?
Rehabilitation in the ICU	-What do you think about in rehabilitation and physiotherapy/mobilizing in the ICU? - Importance of mobilizing/moving already known in the ICU?	- Mobilizing - Active and/or passive exercise - Physiotherapy etc.
Families opinion on being involved in rehabilitation care and possible benefits of this participation (patient and family)	-What do you think about participating/helping with activities of physical rehabilitation care in the ICU? - How do you think about an intervention to facilitate this? - What is the purpose for you? - Why would you want to help? - Possible effects?	- For you (mentally), for your partner (recovery)? -Would it help you in this period, processing everything? Why do/not? - Does it think it can help your loved one during the ICU phase? - Relation between patient and family
Possible tasks, activities to participate in, physiotherapy related	-What would you possibly like to contribute/do? Where would you like to help; … -Why other things not.	Such as: -Helping with mobilization -Assist with physical exercises in bed or in the chair -Passive joint through-movement (passive range of motion) - Breathing, speaking and doing cognitive exercises together?
How they would like to be involved (approach)? How should an intervention look like?	-How would you like to be involved; - How should we approach you? E.g. get options to choose and help? -What do you think is the best way to teach family members what and how they can help/participate? - What do you need for help or steps to be able to participate/practice with your family member? (communication, explanation, practice together, etc.) - How should the intervention look? Brochure, app, etc.	-What steps of being involved? o Invite o Educate o Support Bv: - 1 to 1 explanation and practice, or via a video explanation - a participation menu, - a rehabilitation information and exercise guide - application.
When does family want to participate in rehabilitation care.	- Would you be open at this time to help with tasks (which we have previously named such as.) -When would you (think) be open, be able to participate, want to help in care and perform physical rehabilitation related tasks? -What are possible factors on which it depends whether you want to participate? Sedation/unrest/lines etc. Severity of illness Long or short recording	-Then why? -Why not earlier? - Difference between whether your partner is critically ill or already in the stable phase?
Factors of influence: possible barriers and facilitators	- What would be a barrier of facilitator for you to help/participate or to practice with your family member/neighbor? - Why wouldn’t you do it? - How could we reduce these factors, solve them, help you? -What would you encourage to help/participate? - Relation between family and patient	-Sedation, troubled patient? -Safety: e.g. all lines/infusions? -Fear of helping? Dare? When? -Patient not awake/bright? - 1 to 1 explanation/training? -Help from nurse? - Differences between partners, fathers/mothers, children, boys/girls etc. ? Relationship you have with the patients? Caregiver at home?
Summary (5 min)
Topic	Main question
Summary	- Is the summary adequate? - Are there any aspects that were not discussed in the interview?
3. Patients Introduction questions (5 min)
Topic	Main question
General feeling and inventory of patient’s wishes/needs regarding family at the ICU	- How long ago were you admitted in the ICU? - How do you look back on this period? - Did family visit during the IC period? Did you like that? What did it do with you?
Key questions (15–20 min)
Topic/part	Main questions	Sub-questions/sub-topics
Mobilization and physical rehabilitation in the ICU	- Have you had physiotherapy during your ICU admission? - How did feel about early mobilization? (getting out of bed, if you’ve been out of bed in the ICU)?	- How did feel about this? Pleasant? Did that go well? - Effects?
Family in ICU	- Was your family/partner/parents often visiting you in the ICU? - Did you have any wishes or needs regarding family visiting the ICU?	- Did you like that? What did it do to you that they were there?
Opinions and needs about involving family members in the daily care in the ICU	-What do you think of the idea that family can participate in certain parts of the daily care in the ICU of your loved one? - Would you need that? - What would you need? -Would this have been nice for you, but also for your partner in the IC period?	-Why do you think this is a good idea or not? - Would that have helped you during that period? - Or would it have helped your family member/partner during this period? How then/why would it help and for what?
When: when the patient would have liked it	-When would you have liked that?	-When you were awake? Or even when you were “asleep”?
Patients opinion regarding involvement in rehabilitation care	-What do you think about family participation in physical rehabilitation care in the ICU? -Effects: Do you think that involving family in daily care such as mobilizing/exercising can mean something during this intensive care period? For you or for your family members?	→ Explain: Help to mobilize to the chair i.e., physically activate, perform physical exercises with you and/or speech, breathing & cognitive exercises
Which activities	-What and how would you possibly want them to contribute/do? - We have prepared some example activities: what would you like from the following points- Help mobilize out of bed Help physically practice in bed or in the chair Passive through-movement of joints Helping with food/drink/washing Breathing, speaking and doing cognitive exercises together?	-Why one and why not?
Factors of influence (on feasibility)	Do you think there are factors that affect the feasibility, whether or not you agree with family participation? Barriers/ facilitators
Intervention – approach	How would you and your family want us to approach you and get options to choose and help?	e.g. a participation menu, an exercise guide, brochure or via an app real life trainings moment?
Summary (5 min)
Topic	Main question
Summary	-Is the summary adequate? - Are there any aspects that were not discussed in the interview?
Microsoft Translator Origineel

Appendix B.

Major themes with quotations, regarding family participation in physiotherapy-related tasks

Table

Major theme	Quotations
Prerequisites for family participation	“Yes and therefore what is important, I think you should tell family that it is not a must! That it is allowed, but if you don’t want to, you don’t have to. And if you say later I don’t want it anymore, then that’s okay too.” [ID 3, nurse] “I think that patients who are awake, really have to be able to decide for themselves, but patients who are sedated can perhaps leave it to the family a bit more. Then it is more I think, just passive movements because the patients who were not being able to give permission, we should not include family when we turn the patient or change/wash the patient. Because of privacy for the patient.” [ID 16, nurse] “Of course someone can help very nicely, but someone can of course also be too much on top of it. So that’s why I say that the direction/lead really has to be with the staff members and there should also be differences possible in the way it goes. So I think it should be explained very well (to relatives) that there are different ways and that this is allowed and this is not.” [ID 5, physiotherapist] “But you have to, and that’s the hard part, and of course in such a big unit, you have to carry/bear that together, and also continue it together. It should not be that if you come that it is completely gone again. There must be continuity” [ID 2, nurse] “But I think that it can differ greatly per patient or per case. And per day perhaps. But then I think as physio and nurse you have to communicate very good about it.” [ID 16, nurse]
Timing and interactive aspects	“But I think the most important thing is to indicate it, that you say we work with, we are pro family participation, that you already mention that during ICU admission.” [ID 1, nurse] “At some point when they are admitted for a week, then the question often comes up, because at first people are just shocked that someone is in an ICU, they find it very exciting. And when they notice that it is actually going well and that patients also move and mobilize in the ICU, then they will start asking questions about what they can do.” [ID 9, physiotherapist] “I think that nurses are good to start because they see the family members more often, even in the evenings when we are not there. So I think it is certainly useful but the nurses are also busy enough, so I think it is a nice task for physiotherapist to explain it to the family afterwards. But it is nice if nursing takes the first step and the first contact and information” [ID 6, occupational therapist] “So that the physiotherapist really should do it the 1^st time together, and maybe also evaluate regularly with family and how they are doing or if they have questions. I don’t think you can just give a booklet about family participation, what can you do yourself, get started” [ID 16, nurse] “Imagine you say, this afternoon, leave a note with you (family) may do these exercises, please tick those exercises. And then we continue with that” [ID 17, daughter] “At that moment you would like that is it is okay here I have a list with activities that you can and are allowed to do. Let’s look, fill, take a look at what you think you like to do, from what you find yourself relaxed at, to do for your partner or for your father or your mother.” [ID 3, nurse] “Where is the limit/boundary, because you really have to define that. We are ultimately, that also applies to you (physiotherapist), ultimately responsible for what family does. So far (can family do), and this is my area. Anyway, you can make arrangements in that”[ID 4, team manager]
Eligibility of patients and relatives	“Yes, I would offer it from a week, I think, initially. That you think after a week okay now we are really going to involve the family.” [ID 9, physiotherapist] “Look if you know that your patient is very sick, as family participation happens that you know that he will completely medical decline, then you should not do that, than it is not allowed (family participating in Physiotherapy-related tasks). Then you just have to tell the family today not because he was very restless last night, unstable, so let only us do something today. Tomorrow if he might be a little better, you are allowed to do something.” [ID 3, nurse] “Well I would like it if we do offer that, that it does not only have to be patients’ with a rehabilitation process, but also ordinary patients who are here longer, the long-stayers, e.g. people after neuro trauma or people after, whatever, you know them also, there it can really be an advantage.” [ID 7, physician] “I think the older guard in particular, so also more likely the over-70s, that they find it harder to participate. Yes because then it really is that this is my wife. I think the young people are more used to doing it together.” [ID 9, physiotherapist] “Yes, I think that they see their mother mainly as a mother, and not, because as soon as something will happen here, my sons will also leave. My daughters-in-law stay, they don’t mind, but the kids, boys, are leaving.” [ID 11, patient]
Suitability of physiotherapy-related tasks for family	“Maybe it is, that you do exercises with the arms and legs together, that it might be fun or good.” [ID 18, patient] “That is a form of participation for people who are seriously weak. That family thinks well, we just sitting here very long and often. We can also train/exercise because we think it is important that he recovers (physical) quickly. So we might be able to involve family more actively in this, if the family is open to it.” [ID 8, physician] “If people are good enough that you give them that TriFlow, something where people often don’t think of themselves to practice. That you say to the family, let them practice with that TriFlow, even if they only say it once, then it is already kind of, you already have a profit there. I don’t think about it every hour either … ” [ID 3, nurse] “But I think, for example with mobilizing patients out of bed, that people, especially patients who have been here for a long time … They also have to get in and out of bed. Yes I think, I don’t mind, if family helps with that. Because yes, they can also hold a patient and, or anything their family can hold it.” [ID 4, team manager] “That may also depend on how it goes and how the family member helps. Someone can of course really help with mobilizing, but someone can of course also be too much on top of it, and then working against you.” [ID 5, physiotherapist]
Expected effects	“Then as a family member you don’t have the idea of just standing by and looking at it. If you do something then you have the idea of I help my partner with it” [ID 18, patient] “I think for the group thinking it’s too scary, who thinks everything is exciting/stressful, that you can lower the threshold (when they participate). If you notice gosh there is still just the one you love, there in bed, touching him, movements are possible. You can really mean something to him, that it is also very nice for their psyche, certainly.” [ID 1, nurse] “Well maybe it is, in transferring a patient earlier (discharge ICU). I think that in the end, it might perhaps advance in the speed of the patient’s physical recovery.” [ID4, team manager] “Yes, but it is especially in the recovery phase, of what you say about people, when they come to rehabilitation. That is, then you could say that they are already prepared for the rehabilitation phase That you know how it is, instead of waiting for them to go to the Hoogstraat (rehabilitation center). That you are already planning part of that rehabilitation here” [ID 10, physician] “And at some point they just had something of ooh okay if it is necessary (when the patient needs to come out of bed), then I do not necessarily have to bring in a colleague, because they have to go looking for them again. So if I could help, I just did that. ” [ID 12, partner] “Yes, if that family can indeed deal adequately with it, then that are things that of course (nursing) often forget when it is busy and then it is useful if the family can still do something.” [ID 16, nurse] “I don’t really think for the healthcare professional. At least not a profit in the sense of now I can do less ” [ID 5, physiotherapist] “That is also the danger if the patient is going very well, even if he still has a tube, that the family thinks “oh I can do that myself “and before you know it your patient is on the floor” [ID 3, nurse] “The only thing you have to watch out for, perhaps, is if the partner/relative wants too much, that the patient is going to oppose it. That he does not become the boss or therapist, because we have also experienced that. That someone is going to push too much. ” [ID 9, physiotherapist]
Barriers and facilitators which may affect the feasibility	“You have some family members who understand it very well, know exactly when you tell them what to do and stick to that, and you have families who are there and the moment an alarm starts they drop everything. Because then there will be a beep and then all at once ‘oh shit there is something going on,’ then it is of no use to you, then you are actually guiding that family more than you monitoring your patient.” [ID 3, nurse] “Sometimes you are a bit afraid that you are touching the wrong line, but it is not that I really have the feeling that it is very exciting, no.” [ID 11, partner] “I can imagine that there are people who cannot watch that, who have difficulty with that. Yes. I can say that for me, it was also quite scary the first time. ” [ID 18, partner] “No so that is often with getting out of bed, and people here often do not wear underwear or anything, they only have an OK jacket so it is often with just getting out of bed, getting out of bed, standing up to sit on the chair. People are really naked very quickly, so that is. It is always something to discuss with the patients’ family and not forget the patient himself. Whether they like it or not.” [ID 16, nurse] “I think the privacy of the patient and the safety. And especially with mobilization, that you can do that well, that safety can be guaranteed. If you had to do it normally with two nurses (transfer bed-chair), then not!” [ID 16, nurse] “I’m used to it, from home, because there it was no different (caregiver at home), so for me it is no problem at all to participate, I would also do that to a third or whatever if needed.” [ID 12, partner] “It is really caring instead of being a family member. So I think that is a bit, yes you should really be able to choose whether you want it or not. It shouldn’t be a standard thing you have to help with.” [ID 5, physiotherapist] “But I think that ultimately when colleagues see that they also benefit from it. That then, but that is of course with all changes, the moment you see that you benefit from it, you will also put effort in it. And that is of course, you have to invest some time in it, for yourself as for the patient and for family. Because first you just have to explain things about how they can do somethings best. [ID 3, nurse] “Not everyone will be positive about that, I’m sure. But these are also things that you have to get used to. People have to get used to new things. ” [ID 4, team manager] “I think that it will be seen more as a workload, something you have to. You have to think differently, you also have to be careful with things you say, you have to explain more things, so it takes more time ” [ID 4, team manager]

Appendix C.

Overview of all major themes, categories and subcategories

Table

Major theme	Categories	Subcategories
Prerequisites for family participation	• Make an inventory per patient and per family
	• In addition (extra) to normal treatment
	• Continuity: all staff members must support it	Differences between staff members
	• Balance between rest – exercise (for patients)
	• Cultural differences
	• Direction and responsibility with staff members
	• Relationship between patient and family member
	• Patients’ permission
	• Not required but voluntary (for family)
	• Type, categories of family	Afraid; not asking for it Intrinsic motivated; ask for it Relatives that are open to it but do not ask themselves
Timing and interactive aspects	• Define, frame, set boundaries
	• Approach	Communication with family How to offer: e.g., in diary, note, schedule or booklet, list Relatives can choose what they feel comfortable with
	• Guidance	Explanation Instruction Practice Feedback and evaluate
	• Changes in time	1st phase (shock phase) – relatives more in the background 2nd phase – everything becomes more ordinary and less scary Family participation increases in time
	• When to offer, when to appoint and start	Start awareness quickly – naming it Starting in a stable phase (after critical illness)
Eligibility of patients and relatives	• Patients: inclusion	Anyone, when there is a need Long-term patients: more than a week People who enter a long rehabilitation process Patients with relatives who are anxious Neuro trauma patients, e.g. spinal cord injury Patients who are severely weak: ICU-AW Patients who remain dependent on care Stable patient
	• Patients: exclusion	Protocol – short stay patients Unstable septic and/or sedated patients No touch policy
	• Relatives	First-degree family member: partner, children, brothers and sisters Depends on the type of relationship patient-relative have Difference between older generation and younger Kind of family member: difference son-daughter
Suitability of physiotherapy-related tasks for family	• Exclusion	Medical decisions and medical activities Active mobilization out of bed
	• Inclusion	Passive exercise – prevention of contractures Active exercises – strength training Help with mobilization out of bed Breathing exercises – Tri Flow Massage – apply cream Help with turning – mobilize in bed Functional training arm-hand Coordination exercises Cognitive exercises Help with early intensive neuro-rehabilitation (stimuli) Help with communication Encourage to do exercises – hands off motivating
Expected effects	• Relatives	Less anxiety or stress – more confidence Feeling satisfied, useful and meaningful See progress – working together on the recovery Nicer to visit the ICU
	• Patients	Less stress and anxiety – feeling safe and confidence improve physical recovery—frequency of exercise increases Working on recovery together Sleeping better Feeling less alone
	• Staff members	Saves time and work No added value Job satisfaction Added value only with long ICU admission
	• Long term	Preparing for phase after ICU (rehabilitation or at home) Next ward
	• Unwanted effects (negative)	Family is going to bother too much It will be counterproductive—patient is going to oppose family member Family becomes overconfident Family will take over the tasks of physio, and the added value of physio will disappear Patient is not getting enough rest or makes the patient restless Family get the idea that they have to do something
Barriers and facilitators which may affect the feasibility	• Patient	Surrender to everyone – put principles aside Privacy – vulnerable – naked Difficulty moving extremities—fluid in extremities Patient is too weak Keep patients’ safety Comatose patients, you do not know what they are aware of Not many have family Overload patient – not enough rest
	• Relatives	Anxiety Competence to participate Family member also works in healthcare Family member finds everything interesting and not scary (+) Too burdensome – do a lot already Family lives near vs far away Start of ICU period is stressful Family visits too little or (too) much Age: older relatives less competent than younger
	• Staff members	Increase the burden on staff members Paramedics do not often see family members Do not have the time Changes in daily staff Awareness and behavioral change—resistance against something new No added value for nurses Mobilization: professional help needed Not enough ICU nursing Differences between nurses Invest before you get something in return Their priority is on something else Safety and responsibility
	• Intensive Care Unit	ICU unpredictable Privacy rules Costs – finance Lots of bells and whistles No 24-h visit policy Private patient rooms vs no private rooms
	• Relationship patient- relative(s)	Family member is caregiver before ICU admission Depends on the type of relationship patient-relative have Not feeling equally safe with all family members Patient—not wanting to be cared for by family member Not used to touch each other Relatives—want to remain partner—not a caregiver
Others	• Occupational therapy at the ICU • Experiences surrounding current family participation • Physiotherapy at the ICU • Feelings and experiences of patient • Feelings of family members during IC admission: powerless and useless • Current family participation (broad sense) • Changes in time, the past vs. now