1 Introduction

Stroke is a global or focal dysfunction of the brain caused by an infarction or a hemorrhage. Typical symptoms include for example unilateral weakness, impaired balance, somatosensory and vision deficits as well as communication and memory problems [1]. The impairments caused by stroke may lead to limitations in daily life, such as mobility problems, difficulties with personal care and housework and difficulties taking part in the social life [2]. In Sweden, about 20 000 persons have a stroke every year [3]. But even if many patients recover, stroke is still in many cases a devastating disease leading to extensive disabilities and great need for care in a long perspective. Thus, independent living may not be possible for all patients after discharge from the hospital or rehabilitation facility. In Sweden, about 21% of the stroke patients are reported to be discharged to a nursing home from the stroke unit [3]. A majority of the nursing home residents are of old age and have often multiple diagnoses. All nursing homes in the part of Sweden where the study was conducted are paid for by the municipalities that in Sweden collect taxes directly. The nursing home dwellers pay a fee for rent, food and care. The fee is calculated for each individual and adapted so that the person has a reserved amount for other personal expenses such as clothes, hygiene items, etc. The size of the reserved amount is governed by law and is the same throughout Sweden. The nursing homes can be run by the municipality itself or other actors, but the financing and costs for the person are the same regardless of who runs it.

Regardless of stroke severity, unmet needs are reported in a long perspective. Previous studies have shown that many persons experience unmet needs regarding for example medical and therapy interventions 1–3 years after stroke [4, 5]. Moreover, it has been shown that experiences of unmet needs three months after stroke can predict deterioration in Activities of Daily Living, ADL, from independence to dependence in a one-year perspective [6]. A previous study has shown that follow-ups can reduce hospital readmissions and also healthcare costs [7]. The Swedish national guidelines for stroke [8] recommend a multidisciplinary team-based follow-up for all stroke patients within a few months after the stroke. The follow-up should preferably be performed using a checklist to ensure that all remaining needs of care and rehabilitation systematically are noted and remedied. It has previously been shown that a structured follow-up can improve patient outcomes by facilitating the recording and enable streamlined referrals and treatment for the specific post-stroke problems [9].

The Post-Stroke Checklist (PSC) was developed by an international group [10]. It is a structured, brief and easy-to-use tool, intended to facilitate a standardized approach for health care providers to identify long-term problems in stroke survivors and to simplify appropriate referrals for treatment. Previous studies have suggested that follow-ups using PSC are feasible in a primary care setting [11, 12] and in a hospital out-patient setting [13]. However, none of these studies included persons with extensive disabilities discharged from acute care to nursing homes.

Older people with stroke living in residential care homes are vulnerable [14] and it could be assumed that persons discharged to nursing homes after stroke have at least as big of a need of a follow-up as persons with milder deficits. But a structured stroke follow-up in nursing home residents may be difficult to perform, if the disabilities impede the persons’ ability to give their own perceptions [15]. The feasibility of PSC in persons with chronic stroke in primary care context has been studied [16], but the feasibility of PSC in a follow-up context in the subacute stroke phase for nursing homes residents, has to our knowledge not been published. The aims of the study were to (i) explore the feasibility of a structured post stroke follow-up with the PSC, in nursing homes residents within six months after stroke, and (ii) to map stroke related problems and planned interventions.

2 Method

2.1 Study design

The study is part of a larger project, with the aim to develop and evaluate a structured follow-up for patients affected by stroke during the first year after their stroke. So far, data on patients discharged from the stroke unit directly home have been published [13].

The present study was initially designed as a follow-up study to both describe stroke related problems and planned interventions at three months in patients admitted to nursing homes, and the feasibility of using the PSC for this purpose. However, the recruitment rate remained very low throughout the study. The complex recruitment process became a challenge worthwhile exploring. Accordingly, we adapted the study protocol to an explorative design. It includes data regarding health professionals’ views on the usefulness of the PSC from both a questionnaire and from interviews, as well as quantitative data from the PSC regarding the stroke affected persons’ perceived actual problems and from health professionals regarding ongoing or planned interventions.

2.2 Context

The participating nursing homes are organized by the municipalities and are staffed mainly by assistant nurses. All nursing homes have access to a registered nurse (RN) during daytime, however during nights and weekends the RNs may not be on site since they may be responsible of several other nursing homes. The general practitioner has medical responsibility, and registered physical therapists (RPT:s) and registered occupational therapists (OTR:s) working for the municipality are rehabilitation consultants.

2.3 Participants

Health professionals working in or linked to the nursing homes, and stroke patients admitted to these nursing homes after discharge from the stroke unit, participated. The health professionals participated in the feasibility part, i.e., in conducting the PSC assessments, in identifying ongoing and planned interventions and in the survey and interview. The stroke patients (i.e. nursing home residents) participated in the part describing their remaining health problems mapped by the PSC.

To find health professionals, and nursing home residents affected by stroke who were willing to participate in the study, the project leader (IL) contacted care managers in the municipalities of the catchment area of Skåne University hospital (SUH), Sweden. Five municipalities in both urban and rural areas agreed to participate. Before starting to include participants, the project leader held several information meetings with information about the study and the PSC, with care managers and health professionals (i.e., RPTs, and OTRs) in the municipalities. The RPTs and OTRs were asked to participate in assessing the PSC and the feasibility part when a nursing home resident in their department was eligible for the study. A contact person in each of the municipalities was recruited.

Inclusion criteria for the nursing home residents participating in the study were: having had a first time or recurrent stroke within six months prior to study follow-up; been acute cared for at the stroke unit at SUH; being discharged to and still staying in a municipality-driven nursing home within the municipalities included in the study. Exclusion criteria: Nursing home resident prior to this stroke.

On a monthly basis, one of the researchers (HPR) identified stroke patients being discharged from the stroke unit to municipality-driven nursing homes in the municipalities included in the study. The project leader (IL) contacted the study contact person in the municipality who verified if the patient/nursing home resident was eligible as a potential participant in the study according to the inclusion criteria. The potential participant was then asked for informed consent.

During the period July 2019 to August 2020, 82 stroke patients (42 women), discharged from the stroke unit to a municipality-driven nursing home in the participating municipalities were identified. Of the 82 identified persons in the nursing homes, 24 (29%) were discharged home and 19 (24%) deceased before reaching the time for inclusion in the study. For the remaining persons, several reasons hindered inclusion (Fig. 1). Finally, five nursing home residents participated. The participating municipalities were of different size, from about 20 000 inhabitants in the smallest to 130 000 in the largest.

Fig. 1
figure 1

Flow chart of the participating nursing home residents

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2.4 Data collection

2.4.1 Outcome measures for feasibility

2.4.1.1 Survey to health professionals

A survey directed at the health professionals was developed by the researchers. It consisted of 19 questions which were inspired by a previous study [12]. The questions were about the usefulness of the PSC, and the possibility of detecting stroke related problems in nursing home residents. There were five response alternatives from “no” to “absolutely”, in addition to “do not know”. Slightly different formulations in the response alternatives occurred depending on the questions. Moreover, in three questions, more than one alternative could be chosen. (Supplementary file 1).

2.4.1.2 Interview regarding the PSC

An interview guide with questions about the relevance of the PSC in a nursing home context was developed for this study by the researchers (Supplementary file 2). Through interviews, aspects which are not possible to get from a survey can be captured [17]. The questions addressed if the PSC was relevant for following up persons affected by a stroke living in nursing homes, and if there were any advantages to or obstacles for using it in a nursing home context. Group interviews via Zoom were planned due to Covid-19 restrictions.

2.4.2 Measurement tools for stroke related problems

2.4.2.1 Post-stroke checklist (PSC)

The PSC consists of 11 questions in its original form, dealing with common and treatable problems affecting daily life and quality of life after stroke [10]. In this study, a Swedish modified version consisting of 14 items was used. [13]. The prevalence of health-related problems and ongoing or planned interventions, in the present study divided into medical, rehabilitation and nursing care interventions, was recorded.

2.4.2.2 Modified Rankin Scale

The modified Rankin Scale, mRS, which describes global disability, was included [18]. It can be used by professionals to describe disability in a general outlook and is widely used in stroke studies. The scale runs from 0–6, from perfect health (0) to moderate disability (3) and death (6).

2.4.3 Administration of the measurement tools

First, the RPT or OTR had an appointment with the nursing home resident where they asked the questions in the PSC. The RPT or OTR may or may not have met the nursing home resident before. The RPT or OTR could do the assessment on their own, or together with another professional if they wished. A relative or a nursing home professional could help to answer if the nursing home resident could not answer by him/herself, however the person’s own answers to the questions were preferred. When the PSC questions were answered, the number of questions which were possible to discuss or answer were noted, as well as time consumption for the assessments and the mRS score. Then, the RPT/OTR who performed the PSC assessment noted the ongoing or planned interventions for the problems identified through the PSC, in collaboration with the nursing staff.

After the PSC assessment had taken place, the RPT, OTR and other health professionals who might have taken part independently filled out the survey regarding their reflection of the usefulness of PSC. All eligible health professionals, that is, all RPTs, OTRs and other health care professionals who had participated in the assessment answered the survey. Thereafter, the professionals who had been involved in the assessment of the PSC were invited to take part in an interview to share their views [17].The interviews were performed by the first author (IL), a RPT with experience from both a clinical stroke care perspective and a research perspective. Of the nine health professionals who had completed the survey, eight accepted the invitation to participate in a group interview. Two interviews were set up. However, at the time of the interview, four of those who had accepted were not able to participate. Because of the cancellations, one of the interviews included only one participant. In addition, one of the participants who was not able to participate sent her points of view in writing. The interviews took 38 and 39 min respectively and the health professionals who finally participated were RPT:s and OTR:s. The interviews were recorded as audio files and transcribed by the first author.

2.4.4 Analyses

Survey data are reported as numbers of persons answering the specific questions. No actions were taken for missing data. The data from the interviews were subjected to a basic thematization inspired by Braun and Clarke [19]. The analysis was initiated by IL, familiarizing herself with the data through reading the transcripts and making an initial coding, which was discussed with HPR. After that, the codes were gathered into potential themes. These were reviewed and refined by IL, HPR and ÅR. The final thematization was discussed in the research group and agreed on by all authors. This part of the results is reported in text with quotations. Demographic data are presented with descriptive statistics. PSC problems are reported as the number of persons having the actual problem. Ongoing or planned interventions are reported as examples of medical, rehabilitation and nursing care interventions.

2.5 Ethical considerations

The study was approved by the Swedish Ethical Review Authority (Dno. 2019–01044), and the principles of the Declaration of Helsinki were followed [20]. The inclusion criteria were generous in order to prevent all patients with significant cognitive disorders, aphasia or comorbidities from being “discarded” from the recruitment process at an early stage. Thus, the intention was that all potential participants would actually be approached and the decision to include/not include to only be taken after testing if the person actually understood the procedure/could participate. Informed consent was obtained from the nursing home residents who took part in the PSC follow-up and from the professionals participating in the survey and the interviews. All participants were informed of the voluntariness of the study and the possibility to withdraw without any consequences. To protect the identity of participants, confidential handling of data in accordance with the EU regulation was ensured [21] and data are reported only on group level. Data was kept on safe servers and in password protected files. All data will be archived in a safe storage and in accordance with the Archives Act [22].

3 Results

3.1 Results regarding feasibility

3.1.1 Survey

The survey about the usefulness of the PSC, and the possibility of detecting stroke related problems in nursing home residents was completed by nine health professionals: three registered occupational therapists, five registered physical therapists and one registered nurse. The most positive answer was given for if PSC was informative, with 7 of 9 answering absolutely and 2 partially (Fig. 2). The least positive answer was received for the usefulness of PSC, with 4 persons answering partially and 5 probably, in tandem seven out of the nine answered that they would probably recommend the PSC to their colleagues (Fig. 2).

Fig. 2
figure 2

Health professionals’ opinion of using PSC in a nursing home context

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The participants were also asked about in which way the information from the PSC could be valuable and what could hinder its usage. The most common factor considered was that it could help to identify the person’s problems and needs (all 9 participants). Practical reasons were given as the most common hinder to use it (6 of 9 participants). The question about who would benefit from information from the assessment with PSC was answered by eight participants, all answering that the relatives would, and 7 of 8 answered that the stroke affected persons themselves and the health professionals. Six participants answered that they would use PSC on some stroke affected persons if it came into routine use, two that they would use it on nearly all, and one participant did not answer this question. Eight of the nine participants answered that they thought their colleagues would be rather positive to the PSC, and one did not answer.

3.1.2 Interviews

The analysis of the interviews is presented under two themes; ‘Experiences from using the PSC’ and ‘Obstacles for implementing a structured follow-up in clinical practice’. Quotes are given to exemplify.

3.1.2.1 Experiences from using the PSC

The interviewed RPT:s and OTR:s were cautiously positive to PSC. They considered the PSC to be a usable tool within the team or for collaboration with other professionals.

PSC is useful so as not to miss anything and perhaps to emphasize cooperation with the nurse so as we don´t do double work. Interview I, RPT

Most of the questions in the PSC were perceived as relevant for the stroke-affected nursing home residents. However, questions about leisure time and sexuality were considered inappropriate due to the residents’ severe condition, and the question about personal relationship with family/loved ones not suitable for those who did not have relatives or social networks.

Further on, the interviewed RPTs’ and OTRs’ opinions were that the PSC questions could be difficult to answer for people who had aphasia or cognitive impairments, especially as not all nursing home residents have relatives who can assist.

If the patient has for example cognitive difficulties and can´t answer the questions, is it then up to us to answer for them? And, for example, family relationships, I don´t know what relationship they had with their family before their stroke. Certain things you can see pretty clearly; transfers or stiffness and pain and the such, but other things are a bit difficult to know. Interview II, RPT.

Regarding the best point in time to do the follow-up, the participating professionals did not have a clear opinion about the optimal time to implement the PSC. Their experience was that it took time for nursing home residents to come to a more stable phase after a stroke, and that the time frame could vary from person to person.

3.1.2.2 Obstacles for implementing a structured follow-up in clinical practice

Both internal and external organizational obstacles for implementation of the PSC in clinical practice were perceived. An internal barrier was the risk of increased administration. Moreover, other mandatory surveys were also already in use, such as several risk assessments, but also quality register surveys for dementia and palliative care. The professionals who performed the PSC assessment believed that it was important that registration with a tool also would benefit the stroke affected person, and not just be only excess documentation.

Furthermore, they suggested a discussion on which profession was the best suited to be responsible for the PSC. The RPTs and OTRs were not always physically in the nursing homes, but rather they were consultants and belonged to the municipality health care organization and not the nursing home organization. Also, to work with the PSC as a team was perceived important, but teamwork, including both health professionals and nursing staff at the nursing homes was not established in all municipalities. Joint communication in rounds was one thing sometimes lacking. Moreover, it was not clear where to document findings from PSC, to make the results available for the whole team.

External organizational obstacles perceived were for example if the interventions would mean that help from professionals outside the municipality organization was needed, such as experts in dysphagia and incontinence.

Those of us in the municipality – we have no almoner which is something a lot of our patients would need, we have no speech therapist which is a deficiency since a lot of patients have difficulties with nutrition or swallowing. You write a referral, but it takes time, and then the patient might be too tired to go [to the hospital for an outpatient visit]. [Interview II, RPT]

3.2 Results from the PSC and modified Rankin Scale

The five participating nursing home residents’ mean age was 84 years, two were women. The mRS was scored 4 (i.e. unable to walk) for three of the participants and 5 (i.e. severe disability; bedridden, incontinent, requires continuous care) for two participants. The PSC assessments took 20 min on average (range 15–30) to complete. In two PSC interviews, relatives also took part and in two interviews a nursing staff professional as well. A complete interview was possible to perform with three participants, but in two participants there were difficulties answering item 14, regarding other challenges related to stroke.

All nursing home residents reported problems with ADL (i.e., personal care, cooking, getting outdoors), mobility, spasticity, incontinence, mental fatigue and difficulties performing leisure and other former activities. Four reported stroke related upper extremity pain, whereof two had permanently severe pain both day and night. Also, four participants had problems with communication and relationships with family/loved ones (Fig. 3).

Fig. 3
figure 3

Remaining symptoms and health problems according to the PSC

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Ongoing or planned interventions for the problems were talked about during the assessment and listed by the rehabilitation and nursing staff. In total, 23 interventions were planned for the five nursing home residents; six concerning medical, eight rehabilitation and nine nursing care (Supplemental file 1). Examples were blood pressure control, trying pain medication, frequent shift of body position and mobility training, trying a consistency-adjusted diet such as finely divided food and to encourage the participant to share his/her life story.

4 Discussion

The aims of the study were to explore the feasibility of a structured post stroke follow-up in nursing homes residents by using the Post-Stroke Checklist, PSC, and to map stroke related problems and planned interventions. The study was initially designed as a follow-up study, but due to low recruitment rate and other challenges, the study protocol was adapted to an explorative design focusing on feasibility.

The health professionals who were involved with the PSC were mostly satisfied with the tool, even if adjustments were suggested to fit the specific population. Numerous stroke related problems were identified through PSC among the participating nursing home residents. Also, several ongoing and planned interventions within the medical, rehabilitation and nursing care area were listed. However, several hindrances for performing the structured follow-up and the study itself in a nursing home context were identified.

Many of the nursing home residents’ stroke related problems could be identified by PSC in our study. Similar findings were found by Kjörk et al., who studied PSC in a nursing home context [15]. Also in our study, many of the identified problems were possible to confront and remedy with simple means, indicating that many problems might be solved within the nursing home/municipality organization at no or a small monetary cost. The participating health professionals’ opinion was that the PSC could benefit both the stroke affected nursing home residents, the relatives, and the professionals.

The nursing home residents participating in the present study could be considered similar to those in another study [15]. However, the focus in the latter study was to use PSC as a screening instrument in a varied population while the present study aimed to use PSC in the context of a structured follow-up which may eventually lead to targeted interventions. Our participants could also be considered representative for persons living in nursing homes in Sweden, since only persons in need of extensive nursing care are admitted to this form of accommodation.

The PSC assessments in our study showed that all nursing home residents had severe and numerous stroke-related problems that needed to be addressed, indicating that a structured stroke follow-up is warranted. All had extensive problems in ADL and mobility including spasticity and pain. Pain might be especially important to highlight, as it causes the individual much suffering and previously has been described as prevalent after stroke [23] and also among nursing home residents in general [24]. Pain medication alone might not suffice as an intervention, as further management including for example pressure relief, change of sitting position, and movement exercises, i.e., team interventions, might be needed.

Regarding how to perform a structured follow-up by using the PSC, the participating health professionals answered that they would use PSC on some or nearly all stroke affected nursing home residents if it would come into routine use. The main problem perceived was to gather information and opinions from persons with communication problems due to aphasia or cognitive impairments. Routine tools used in nursing homes were mainly risk assessments, which could be performed by the professionals without involving the nursing home resident. The PSC is a tool to assess a broader perspective that provides guidance for further measures and referrals to the proper instance in the care chain. Therefore, to be able to use PSC in nursing home residents in clinical practice, another approach is needed. For example, relatives might need to be involved in describing problems that matter to the nursing home resident and discussing proper actions in a person-centered manner. Also, information might need to be collected over a longer period rather than on a single occasion and from several sources. Multidimensional measurements might be needed in addition, for example when assessing pain [24].

According to how the PSC was perceived to fit the nursing home residents’ problems and needs, the health professionals participating in the present study perceived PSC as relevant. But the questions relating to leisure activities and sexuality were perceived as difficult to ask and answer. PSC has in the original form a primary care setting focus [10] and adjustments to specific populations might be needed. It has been suggested that an additional comment could be added if a question was not perceived suitable [15]. Therefore, before using PSC in clinical practice in a nursing home context, adjustments in the tool need to be considered.

Several organizational obstacles were also identified in the present study, which need to be considered before introducing a structured follow-up with PSC in clinical practice in nursing homes. It was perceived important that the results of the structured follow-up should lead to actions for the nursing home residents and not merely become an administrative protocol that had to be filled out without obvious benefits for the affected persons. Administrative burden is a problem reported previously [25]. Another issue raised was which professional category was most suitable to perform the structured stroke follow-up. In the present study, RPTs and OTRs were chosen to perform the PSC, as many of the expected identified problems would need actions or interventions from the whole team. But, the participating RPTs and OTRs perceived that they acted rather as consultants as they belonged to the municipality health organization and not the nursing home organization. A nurse, frequently working in close cooperation with the nursing home personnel, might therefore be more suitable for the task. However, the PSC was perceived as a suitable tool for team collaboration within the municipality organization. Among external obstacles noticed around a structured stroke follow-up was the collaboration needed between the nursing home organization, the municipality organization, and the primary care organization. Even if the general practitioner was responsible for the medical interventions, problems identified in the structured follow-up using PSC might need interventions or actions from several professionals and require a closer collaboration than was present in the participating organizations in the actual study [26]. Moreover, the municipalities did not have adequate access to skilled knowledge in for example swallowing problems and incontinence, which was perceived as a problem. For nursing home residents, interventions performed by the nursing home staff might be preferable than referrals since it will cause less strain. The development towards person-centered care [27] acknowledges the importance of access to skilled professionals able to support nursing home residents in place.

There were several challenges with conducting the study. Despite information and meetings between the researcher and the municipality professionals, the participation rate remained low. The inclusion criteria were not always applied correctly by the health care professionals, who in an effort to protect the stroke patients from stress, decided themselves that some nursing home residents were not fit to participate, instead of asking about the person's own will. As researchers, we were dependent on the health care staff for inclusion and tried to explain the correct application of the inclusion criteria but with little success. Some of the persons who were screened for participation might have been eligible for participation and willing to participate if properly asked. Another study specific issue was related to the researchers not belonging to the municipality organization and thus not well known by the professionals in the nursing homes, which might have contributed to the low participation rate. It was also challenging to involve professionals from an organization such as the municipality that was not particularly used to conduct scientific research; as an example, some of the staff considered that despite the ethical approval, it was inappropriate to ask the stroke-affected nursing home residents about their problems.

Most of the reasons and obstacles described above are not unique for this specific study and have previously been identified when conducting research in long-term care facilities [28]. However, it is important to study vulnerable groups such as nursing home residents to enable improved care based on scientific evidence. Therefore, future studies need to overcome the problems which are related to research in long-term facilities.

To perform a structured stroke follow-up of vulnerable persons in clinical practice and find proper actions for the identified problems is utterly challenging in the context of a complex organization with several stakeholders [16]. Addressing identified needs and meeting patient expectations has been described as challenging given available healthcare services [16]. Medical, rehabilitation and nursing care actions are important, both from an individual perspective, but also from a societal perspective, as a higher degree of dependence will lead to higher costs [29]. Rehabilitation should be adjusted to the individual, and improvements are possible [30]. But, finding engagement in meaningful activities among persons with complex health problems might be challenging [31], calling for involvement from skilled professionals.

If a structured stroke follow-up using the PSC or any other tool could be implemented as a clinical routine, several of the research specific problems described above could be minimized, since there for example is no need for ethical approval for routine assessments. But teamwork and collaboration between stakeholders would still need to be built up to be able to take action for complex stroke related problems in nursing home residents.

5 Strengths and limitations

We screened the whole population affected by stroke admitted to nursing homes within the last six months in the participating municipalities, which is a strength. Moreover, the inclusion criteria were generous to avoid bias, and the exclusion criteria kept to a minimum to be able to include all possible participants. Another strength was that the data collection let the nursing home professionals’ voices be heard. The switch to an explorative design enabled us to describe the actual setting during normal circumstances. Hindrances were discovered, which need to be overcome when discussing implementation of a structured follow-up in clinical practice. The main limitation was the very low recruitment rate which made descriptive statistics impossible. Moreover, the study was conducted during the Covid-19 pandemic, which affected the professionals as well as the nursing home residents and the whole project in a negative way.

The validity of the study depends on trust in the researchers’ interpretation of the data and the measures taken to demonstrate this [32]. The validity is strengthened by following the procedure for handling and analysis of data carefully described in the methods. In the results, quotations are used to provide the opportunity to assess the study’s validity and categorization. The results of this feasibility study are not possible to generalize from but provides a picture of the difficulties in performing studies in contexts not used to conducting scientific studies, and with older persons with extensive disabilities and care needs.

6 Conclusion

In conclusion, the present study shows the difficulties of both studying and following-up vulnerable persons affected by stroke in nursing homes within a complex organization. Still, even if only a few participants could be included, the present study highlights the need for identifying and addressing stroke related problems in a nursing home context. The professionals’ perceptions acknowledged the need for a suitable organization able to take action to deal with the identified problems. Furthermore, difficulties in recruiting physically and mentally frail participants in studies might lead to an inadequate basis for decision-making, hindering people with extensive disabilities to receive scientifically based interventions. More attention and further studies are warranted to create a background for better care for those with extensive disabilities and great needs of care. The nursing home residents’ experiences of the assessment with the PSC and opinions on if they perceived questions relating to their problems and needs distressing was not targeted in this study, an aspect which also needs to be investigated in future studies.