Dilemmas in rehabilitation and patient strategies in an intensive home intervention: a follow-up study

ABSTRACT

Background

The original project, where older persons received reablement performed by an interprofessional team showed success factors for IHR. However, since there is a lack of knowledge about why some persons do not recover despite receiving IHR, this study follows up patients’ experiences of IHR.

Aim

To describe older persons’ perceived dilemmas in the reablement process within the framework of IHR.

Method

11 CIT interviews with participants who have previously received IHR, were analysed, interpreted and categorized according to CIT. The study was approved by the Swedish Ethical Review Authority.

Results

The results showed disease-related dilemmas, fatigue or pain so that participants could not cope with the prescribed exercises. New diseases appeared, as well as medication side effects made exercising difficult, and painkillers became a prerequisite for coping with IHR. Low self-motivation and mistrust towards the staff emerged like lack of trust due to otherness such as sex, cultural background, or language also became critical.

Conclusions

Interventions that consider individual- and contextual dilemmas are very important. By recognizing critical situations, this study can work as a basis of evidence to further develop interventions for older people living in their own homes and to ensure them to stay there.

KEYWORDS:

• Active ageing
• follow-up
• home rehabilitation
• interprofessional team
• municipal care
• recovery
• reablement

Background

Older persons should have the right to a safe, dignified life and well-being, in line with the WHO’s definition of active ageing (WHO, 2002). The search for appropriate care interventions that consider individual- and contextual dilemmas related to reablement are very important for qualitative municipal care at home (Gustafsson et al., 2014). Reablement is defined as “services for seniors with physical- or mental disabilities that help them adapt to their condition by learning- or re-learning the skills needed to function in everyday life” (Social Care Institute for Excellence SCIE, 2013).

Some earlier studies show a positive health impact of reablement, especially on health-related quality of life and service utilization (Tessier et al., 2016). However, some RCT-studies claim that there is no evidence to suggest reablement to be effective in reaching its measured goals of increasing personal independence or reducing use of personal care services (Legg et al., 2016). Legg et al (Legg et al., 2016)., also problematize that there have been rather heterogenous patient groups in earlier studies that claim that reablement is effective and therefore these results are hard to apply to specific interventions. Still there is good evidence supporting the effectiveness of reablement to the more homogenous group of older persons living in their own homes. The implementation of reablement interventions has led to fewer persons requiring homecare home care services compared to those receiving usual home care services as shown by Glendinning et al (Glendinning et al., 2011), King et al (King et al., 2012), Lewin et al (Lewin et al., 2013, 2014, 2013), Lewin and Vandermeulen (Lewin & Vandermeulen, 2010), Senior et al (Senior et al., 2014)., and Tinetti et al (Tinetti et al., 2002). Considering this evidence-based effectiveness and positive impact observed in several studies, the implementation of reablement is of interest to policy makers (Tessier et al., 2016).

Our research group carried out a research project in 2015–2019 in collaboration with Eskilstuna Municipality in Sweden (Gustafsson et al., 2019, 2019). The Intensive Home Rehabilitation (IHR) project was designed as an intervention where the participants, older persons (65+), who applied for nursing care in the municipal home service, received reablement interventions performed by an interprofessional team. The results were compared with a control group who received the usual home care service. Interviews were conducted in 2016 with 24 of the older persons who were part of the project. The intention of the initial project was to reduce care efforts, promote self-care and a safe situation for home-dwelling older persons, which in turn might delay the need for additional care efforts such as expanded home care, nursing home or hospital care. A multi-professional team worked with intensive rehabilitation (offering 3–8 home visits a day) for people who, after a period in hospital, needed home care. Success factors of IHR were shown the caregiver to be motivating, that he/she created a positive atmosphere, that he/she felt the common rhythm and did something beyond expectations in an effort to support the older person. The older persons in this study appreciated reablement which included rehabilitation goals related to the person’s stable relationships and larger life context (Östlund et al., 2019).

The original project was based on the theoretical perspective of Nordenfelt´s (Nordenfelt, 1993, 1995) welfare theory of health (WTH) that describes health as the ability to act, which is in line with the basics of the reablement approach. The person’s participation, health and well-being can be understood in a broader holistic view of health that includes the person’s multidimensional life goals, self-realization, and well-being (Nordenfelt, 1993). However, there is a lack of knowledge about why some persons do not recover despite receiving IHR. A few years after the latest intervention (2019), we therefore conducted a follow-up study regarding patients’ experiences of reablement with focus on their experiences of dilemmas related to reablement.

The aim was therefore to describe older persons’ perceived dilemmas in the reablement process within the framework of Intensive Home Rehabilitation-intervention, that had the potential to hinder recovery.

Methods

Study design

The study had a qualitative, retrospective design and was performed- and analysed according to Flanagan’s (Flanagan, 1954) Critical Incident Technique (CIT), further described by Svensson and Fridlund (Svensson & Fridlund, 2008). This approach focuses on the gathering of certain important facts concerning behaviours in defined situations. An incident is the same as a dilemma, episode, event, or situation in/from the participant’s life. The initial purpose of CIT is to understand the participant’s subjective world—how the person experiences circumstances. As in most qualitative research, the extent to which a reported observation can be accepted as a fact depends on the objectivity of the observations and the readers understanding of the text (Svensson & Fridlund, 2008).

Participants and intervention

The participants were chosen to offer a basis to describe the situation of older persons (65+) receiving IHR in a Swedish middle-size municipal. The reablement intervention, i.e., a time-limited intensive home-based rehabilitation, involved intensive everyday rehabilitation visits by an interprofessional team that included nurse aides, occupational therapists, physiotherapists, a nurse and a social counsellor. Together, the team and the older persons agreed on rehabilitation activities and practices based on person-cantered goals focusing on regaining autonomy in life. All members of the team worked towards the same individualized rehabilitation goals. The initial exclusion criteria for receiving the IHR intervention were severe cognitive dysfunction, acute life-threatening illness, severe mental illness, or other illness or disability that made the older persons unable to express their will. Further exclusion were participants who were no longer able to express their consent, ending up with a total of 11 older persons all living alone in their own homes giving their consent to participate in the interview follow-up study. The study took place after a span of two to four years after the intervention, the latest measurements were conducted 2019.

Data collection

Data were collected through individual qualitative semi-structured interviews according to CIT which encourages reporting on dilemmas and consequences. Critical incidents were focused on the time and setting of the intensive rehabilitation intervention. An example of interview question was – Can you describe any problematic situations that IHR brought? What were the consequences for you? What strategies did you use to resolve/cope with the situation? It was of great importance that the participants were given the opportunity to describe both positive- and negative critical incidents and decide whether they were important or not. However, in this follow-up study we focused only on the problematic situations, so-called dilemmas, that are related to their other needs and the needs of the IHR-intervention. Any description of such a dilemma found in the interviews were in this case considered as a unit for further analysis (Flanagan, 1954).

Analysis

An initial listening and reading of interview data was carried out to create a first understanding based on the content of the transcribed interviews. The interview data were analysed, interpreted, and categorized according to CIT in the spirit of Flanagan (Flanagan, 1954) described in detail by Svensson and Fridlund (Svensson & Fridlund, 2008), Fridlund, Henricson and Mårtensson (Fridlund et al., 2017), with a focus on the variation of dilemmas in the reablement process. The analysis of data began with an accurate and repeated comprehensive reading of the CIT interviews to become familiar with their content. The incidents with perceived dilemmas were delimited and then structural analysed by dividing the meaning units into subcategories and then a categorization representing the general character of the sub-categories describing main areas (Figure 1). The analysis was validated by the researchers in the project group who represent different professional experiences as well as different academic levels.

Figure 1. Categorisation of dilemmas in the reablement process.

Research ethics

The study was approved by the Linköping Ethical Review Authority (D.nr 2021–01500). All participants were informed orally about the study and received an information letter with consent form. The individual participant received an oral reminder of the content of the missive letter before the interview began. They were also informed that they could withdraw their participation at any time until publication of the research results. Further ethical considerations were carried out in line with the World Medical Association Declaration of Helsinki (World Medical Association Declaration of Helsinki, 2002) and The Swedish Data Protection Authority (DPA) GDPR (0000a).

Results

Below follows a description of the categories representing subcategories that were identified in the comprehensive reading of existing interviews, and which respond to the aim: to describe older persons’ perceived dilemmas in the reablement process within the framework of Intensive Home Rehabilitation-intervention, which had the potential to hinder recovery.

Category 1: dilemma related to disease

Though, the team have taken the disease situation in consideration planning the reablement intervention, in the interviews, a lot of disease-related critical situations in the IHR intervention were shown. When home care depended on the consequences of a diagnosis that were of a varying nature, or on relapses such as cardiovascular disease, rheumatism, etc., then the process did not follow a linear path but went in circles that changed depending on the status of the disease. Thus, the success of an intervention might be difficult to see. The dilemma focused on the question if it was the disease that made the patient fail to achieve the goals or if the intervention could be considered as unsuccessful. It was hard for the patient to recognize the results of the IHR intervention and know what depended on the consequences of the illness relapses or symptom-free periods.

When you get an epileptic seizure, yes, you get to see so you do not go numb completely. They cannot do much. But I still think they have tried to help me. But then it’s well up to oneself to lie on too, but that’s what is not so easy to do.

(8)

When the patient due to his/her underlying disease was affected by fatigue (extreme tiredness caused by severe illness) and simply could not cope, a dilemma related to the IHR intervention was created. This type of fatigue made every effort extremely laborious and stressful. Often, the participant wanted to exercise but the physical strength to participate in the IHR intervention did not exist. “They said -Try, -No, I do not dare, I said. I felt so damn weak.” (3) “It was to be strong. I did not have much energy.” (4) Frailness and tiredness caused by old age itself could be seen as a dilemma for the older person that really had a will to rehabilitate but felt he/shefailed:

But then maybe I am one of those not suitable for it [IHR intervention], who are a little … maybe out of old age and weakness. By the way, you do not have to be that old, something can happen before as well.

(1)

When the pain was too severe the patient could not absorb the IHR but rejected the staff because the exercise movements hurt too much. This critical situation could be experienced as fear. Fear that it would hurt unbearably and fear of the staff that could unknowingly cause even more pain that the older persons already suffered from.

Yes, but then it was like this too, it wasn`t easy for them … I have to admit it. I had got this morphine then because I had such terrible pain and it made me stop eating. I could not, it disgusted me, everything. “No” I said then, “I do not usually eat this early”. I blamed.// … and then the carers tried in every way.

(3)

Some participants suffered from the onset of a new medical condition during the intervention, such as a new stroke, new fracture, etc. “I would move without crutches and all that stuff, and it’s almost worse now, because then I was not so dizzy in the head, I do not know what to do.” (6) When new diseases appeared during the IHR intervention then this was identified as dilemmas which meant that the reablement process stopped or possibly went back to a step where the patient was even worse than when included in the intervention for the first time.

Category 2: Dilemmas related to medication

When the medicine (morphine) made the patient feel too drugged to keep up and follow instructions it was seen as a critical dilemma in the IHR intervention. Some participants were so affected by medication for their underlying disease, that it was a dilemma related to their other needs and the needs of the intervention. Others found the reablement exercising so painful that they had to take a high dose of painkillers in advance. This led to difficulties in taking part in the intervention.

One additional dilemma of medication was when side effects of the medication made exercising difficult, and the exercise had to be done to rehabilitate. Some of the participants had such strong medication that it made them feel dull, stiff, or faint when they got up and as a result were worried about exercising as they were afraid of fainting or falling. For some participants, the pain was sometimes so severe that the painkillers became a prerequisite for coping with the exercises within the IHR intervention. Some also felt that the painkillers were clearly necessary to be able to exercise and move forward in their reablement process.

Category 3: dilemma related to convenience

The IHR interventions´ basic approach was for the team to encourage the patients to try to perform activities in their daily routines by themselves. Initially, this had nothing to do with the team viewing the patient’s degree of convenience, but rather their abilities and motivations. From the participant’s perspective this could be seen as borderline offensive. “I could … I actually dared to ask them, -Can you do this, help me? But then they could say -You should try to do it yourself”. (3)

Another IHR intervention dilemma was when there was a lack of self-motivation among the patients. Often time spent with the team worked well but when the team left, the exercising in form of “home-work” was difficult to achieve: “And then, in the name of truth, I must also admit that I’m not particularly interested in sitting and pulling bands and counting time and stuff like that, maybe I’ve been a little careless with the exercising.” (9)

Some of the participants termed the dilemma of letting convenience take over though knowing training was the healthy way to go. It was perceived as easier to live on like they used to and do the things they used to do before the IHR intervention. This perception reigned even if they had not achieved the skills they had before the illness that had been the reason for starting the IHR in the first place.

And when I was not allowed to have them [the IHR team] anymore … yes, then I continued for a while and then it became rarer and rarer. And then … sluggish and relaxed as you become. Yes, but most people are. The smallest team of the resistance. So, it is …

(8)

Sometimes a dilemma was identified when the self-confidence of the older persons declines severely, and the older person gave up and did not think he/she could handle the set goals. “I tried to fix it myself as well. I could do a little. But I wanted them to do it because I was safer then.” (2) “At first you think you know anything. I lost everything. It is a bit scary; I did not think I knew anything. “(3) This was something the IHR team supported successfully in many cases, but sometimes the lack of self-confidence was so deeply rooted that it became critical for the patient to be able to absorb the exercise within the IHR intervention in the planned way.

Category 4: dilemma related to lack of trust

The last major area that was visible in the interviews was the mistrust of health care professionals that appeared to be a dilemma in the IHR intervention. When trust in care and the care system was burned due to serious care damage in the hospital, it could affect even the IHR team’s access to the patient in need of IHR intervention. Participants who experienced malpractice also had difficulty connecting with the IHR team and had, in some ways, lost confidence in the entire health care system. “And then it was once in a while I fell out and hurt my thigh … And then it started with the occasional one and. It was very doubtful. So, we thought so … no, we can do it ourselves.” (5)

Some patients were included as it was not initially apparent that they had symptoms of mental illness such as paranoia. These symptoms greatly affected confidence in the IHR and thus became a dilemma related to IHR intervention when mistrust towards the staff emerged.

But one may wonder what they are doing. These guys who … They’re going in now … They’re getting keys somewhere … They’ve changed the lock twice and it does not help. He has so much darkness in him so it’s not wise. He was on my strainer inside the bathroom and blocked the holes in the strainer.

(3)

Lack of trust as a dilemma related to the IHR intervention could also depend on a sense of otherness cultural differences or language problems between some of the members of the IHR team and the patient:

I do not know why a foreign girl came. It was probably an opportunity they had been prevented from doing. But I prefer the same staff, Swedish help, all the time. Because you must be able to understand each other also when you need help. When people do not understand what they say, and I do not understand what they say …

(7)

A sense of otherness also took over when being encountered by the opposite sex during the IHR intervention (i.e., when male carers were supposed to care for female patients).

Yes, sometimes it’s boys who come. I like him because I have nothing against him as a person, but the first thing you should do in the morning, you should get up and shower in a small bathroom with him that you do not know or so. I do not really like male strangers coming that way.

(9)

A lack of trust in men and the inconvenience of encountering the opposite sex during intimate care situations created a dilemma related to the IHR intervention.

Discussion

The aim of this study was to describe older persons’ perceived dilemmas in the reablement process within the framework of Intensive Home Rehabilitation-intervention, that had the potential to hinder recovery. In the empirical data from the interviews, we found disease-related dilemmas, dilemmas related to medication, dilemmas related to convenience, and a lack of trust and confidence in the older persons. If one views of WTH and thereby health as the person’s ability to act (Nordenfelt, 1993), the results of this study could be understood as a description of what prevents the person from acting in the service of their own health and well-being. The dilemmas that came up in the described critical situations varied. This is a natural consequence of the fact that everyone has a wide variety of needs and wishes. Unfortunately, earlier research shows that there seems to be an imbalance between what in WTH calls -older persons’ vital life goals and their expectations of care, that often differ from the health and welfare organizations’ goals and available resources (Attre, 2001; Larsson et al., 2007). The earlier studies within the project revealed that for most of the older persons, the IHR intervention was very successful for experienced general health and independence in the aspect of continuing living their life at home (Gustafsson et al., 2019; Östlund et al., 2019). However, there were various problematic situations that could be of a functional, physical, or occasionally mental nature limiting the older persons during the IHR period. When initiating an IHR intervention, it may be important to consider the diagnosis, and any other underlying diseases, of the patient who is to receive the intervention since we see that these affect the IHR process. If physical and disease-related dilemmas related to the IHR intervention have such a large place in the participants’ descriptions, one may also ask whether a medical assessment of, for example, a nurse in addition to an assistance assessment by an assistance officer (who decides the granting of care today) would be preferable before deciding on inclusion to an IHR intervention under the auspices of the municipality. This could determine that those who are assessed to have the most benefit and opportunities to take advantage of an IHR intervention can be offered this effort.

The initial exclusion criteria for being invited to the IHR intervention were severe cognitive dysfunction, life-threatening illness, severe mental illness or other illness/disability that would prevent the participant from expressing their will. In the category dilemmas related to medication, we could see that some participants were so affected by medication so much so that it prevented the intervention. The dilemma is also illuminated in earlier research (Bloomfield et al., 2020), that the medication that aims to relieve suffering for older adults instead deprescribing interventions, increased risk of falls, hospitalizations, cognitive impairment, and even death.

The dilemmas related to convenience brought up by the participants took the form of a self-criticism for not working forward enough in the reablement process. Earlier research shows that health care staff can perceive a patient as being lazy when the patient in fact may be diagnosed with fatigue caused by a disease (Broadhurst, 2020). Though reablement is based on the individual preferences, resources, goals, followed by the persons own described situation, sometimes the participants were disappointed with their own effort in the intervention. The participants were anxious to point out that it was not the staff who expressed these dilemmas related to convenience but a feeling of guilt that came from the participants themselves. One could also sense that convenience and motivation were in close connection to each other. Hjelle et al (Hjelle et al., 2017). found that good co-operation with the reablement team had a big influence on strengthening the motivation within patients in the reablement process.

The lack of trust as an obstacle for access alliance between older adults and the caregiver is also seen in earlier studies (Kuluski et al., 2019) where older adults need someone they could rely on in times of need. Though, a sense of otherness was visible in the results as a dilemma related to success in the IHR-intervention. Specific persons in the team were not experienced as being familiar to the patient’s worldview and therefore seen as problematic. Torres (Torres, 2015) states that to view the cultural or ethnical other as problematic is a generalization that can be considered or lead to racism and therefore nothing the health and welfare organization can support. But knowledge about this phenomenon is of importance for understanding the caring relations and barriers for the IHR intervention. Similar to this is the view of carers of the opposite sex. Earlier studies also show that male carers are not always permitted to engage in the full range of activities when caring for patients of the opposite sex (Keogh & Gleeson, 2006; Keogh & O’Lynn, 2006). Also, Al Shamsi et al (Al Shamsi et al., 2020) found that language barriers in health care led to miscommunication between professional carers and the patient. Although some of these aspects are difficult to meet, these barriers reduce experienced well-being on both sides and decrease the quality of the intervention as well as the received home care as a whole.

Methodological considerations

CIT is a methodology rather than just a tool for organizing data. CIT is frequently used in health care research to explore dilemmas, and actions that provide qualitative care. As it is more than a tool, it is not recommended to be used in combination or parallel with other methods (Viergever, 2019). As both researchers that conducted the CIT interviews were district/home health care nurses and familiar with the methodology as well as the environment, i.e., visiting older persons’ homes, the risk of misunderstandings and tensions during the interviews was minimized. One aspect Flanagan (Flanagan, 1954) raises according to credibility using CIT technique is the retrospective perspective where data collection techniques risk creating a situation where participants forget ’what it was like’. This risk may increase in line with the time that has passed since the critical incident so that the participants may “tailor the truth”. On the other hand, the memory of the critical incident may be so specific that it has “made an impact” on the experience and has therefore become the participant’s understanding of the phenomena. This is still of interest for us researchers, trying to develop interventions perceiving health for older persons living in their own homes. The critical incidents that were described by the older persons were analysed after transcription and sorted into areas by content. This step of analysis was repeated until four main areas were identified. Within the main areas of incidents sub-categories were identified in cooperation with the whole research team (n ~ 4). These steps of procedure minimize the risk of subjectivity that can affect a result by a researcher working alone (Svensson & Fridlund, 2008). The results were strengthened by their confirmation with the preunderstandings of the research team based on our professional backgrounds as well as results from previous empirical studies the research group earlier have produced. But also, by previous theoretical and philosophical sources presented in the background of this paper.

Conclusions and implications for practice

While previous research has shown that many patients have been generally very satisfied with the IHR intervention, this present study documents dilemmas made visible when the participants encountered in the IHR process. Since the search for appropriate interventions that consider individual and contextual experiences are very important, recognized barriers in this study can work as a base of evidence to further develop these types of interventions for older persons living with perceived health dilemmas in their own homes as long as possible. One understanding of the results of this study could be to change to a slightly broader exclusion criterion for this type of IHR intervention and not just exclude persons with severe cognitive dysfunction. The problem became apparent in the results regarding participants who were found to have a mental illness such as paranoia, which significantly affected the success of the IHR intervention. However, this finding indicates a need for developing specific tailored interventions that can promote reablement also among people living with different types of cognitive dysfunction. If main disease or medical-related dilemmas related to IHR intervention have such a large place in the participants’ descriptions, perhaps a medical assessment of, for example, a nurse alongside an assistance assessment by an assistance officer would be preferable before deciding on an IHR intervention under the auspices of the municipality. This could determine that those who are estimated to be better advantage of the intervention can be offered it. How easy or hard these barriers are to prevent have to be considered in the specific health and welfare organization, and possibly in the specific relation with the specific older person.

Author contributions

Study design: L-K G, M S; data collection: A B, TP; data analysis: L-K G, A B, T P; manuscript preparation: L-K G, M S, A B.

Ethical approval

The study was approved by the Regional Ethics Committee in Linköping, Sweden (D. nr 2021–01500).

Acknowledgments

We want to thank all participants, and the care professionals in the municipality of Eskilstuna that made this research possible. We also thank Simon Dyer for professional linguistic review of the paper.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

The foundation of Eskilstuna municipal provided financial support. Open access funding provided by Mälardalen University.

Notes on contributors

Lena-Karin Gustafsson

Lena-Karin Gustafsson RN, RNT, PhD, Associate Professor at the Department of Health, Care, and Social Welfare - the division of caring science at Mälardalen University, has a broad experience of managing scientific projects in the area of older persons and home care and runs several research projects in the field. As well as projects within psychiatric care. Dr Gustafsson is engaged in several networks internationally and nationally, involving Thailand, India, Finland and Norway. Dr Gustafsson is a leader of the research group CaReHel at MDU that focuses research in the area of Care, Health and Recovery. She is supervisor of two doctoral students working with projects in the area of home care for older persons. She has also supervised two doctoral students to the dissertation. In two of the doctoral projects mentioned Dr Gustafsson has been head supervisor. Dr Gustafsson was also responsible and are engaged in the development and implementations of reablement teams for older persons in Sweden (intensive home- rehabilitation) promoting successful ability to stay at home. As well as development and implementation of a system for multi organizational and multi-professional caring teams for patients with multimorbidity in the area of Close care.

Anna Bondesson

Anna BondessonS Lecturer at the department of health, care, and social welfare- the division of caring science at Mälardalen University. Specialist Nurse with focus on primary health care. Research assistant in scientific projects in the area older persons and home care.

Tina Pettersson

Tina PetterssonS Lecturer at the department of health, care, and social welfare- the division of caring science at Mälardalen University and Clinical Lecturer in the area of home care. Specialist Nurse with focus on primary health care. Research assistant in scientific projects in the area older persons and home care.

Mirkka Söderman

Mirkka Söderman RN, PhD, Senior Lecturer at the Department of Health, Care, and Social Welfare - the division of nursing at Mälardalen University. She has experience of research in the field of cancer, insurance medicine and several research projects in the field of care of older persons. For instance, a research projects of the Respite care today and in the future which is the basis of this proposed project, as well as projects focusing on older persons and their close relatives, HEMMA-project, a project focusing on opportunities for remaining in ordinary housing in case of increased need for care, and project focusing on intensive home rehabilitation for older persons. Dr Söderman is a member with a responsibility to research dementia care and care for older persons living in ordinary housing in the research group Care, Health, and Recovery at MDU. At MDU she teaches in the nursing program and master programs and is responsible for the Specialist nursing program in Home Health Care.