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A sense of security: Spouses' experiences of participating in an orthopaedic case management intervention (the SICAM-trial)
Accepted Manuscript Title: A sense of security: spouses' experiences of participating in an orthopaedic case management intervention (the SICAM-trial) Author: Connie Bøttcher Berthelsen, Jimmie Kristensson PII: DOI: Reference:
S1878-1241(16)30061-2 http://dx.doi.org/doi: 10.1016/j.ijotn.2016.06.002 IJOTN 276
To appear in:
International Journal of Orthopaedic and Trauma Nursing
Please cite this article as: Connie Bøttcher Berthelsen, Jimmie Kristensson, A sense of security: spouses' experiences of participating in an orthopaedic case management intervention (the SICAM-trial), International Journal of Orthopaedic and Trauma Nursing (2016), http://dx.doi.org/doi: 10.1016/j.ijotn.2016.06.002. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
A sense of security: Spouses’ experiences of participating in an orthopaedic case management intervention (The SICAM-trial)
First and corresponding author Connie Bøttcher (CB) Berthelsen RN, MScN, PhD Assistant Professor Section of Nursing Institute of Health Science Aarhus University Denmark
Contact address: Tuborgvej 164, entrance B8 2400 Kbh NV Denmark
Daytime contact telephone number: +4587167875 E-mail address: [email protected]
Last author Jimmie Kristensson RN, MScN, PhD Associate Professor Institute of Health Sciences
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Faculty of Medicine Lund University Sweden E-mail: [email protected]
Department of Health Blekinge Institute of Technology Karlskrona University Sweden
ABSTRACT The aim of the study was to explore and describe spouses’ experiences of participating in a case management intervention during older patients’ fast-track programme having total hip replacement – and which intervention elements they found useful. Data were collected through qualitative interviews with 10 spouses from the intervention group of the SICAMtrial, directed by predetermined codes based on elements of the intervention. Data were analysed by both authors using directed content analysis. The results showed that the spouses were very pleased about being a part of the case management intervention. They enjoyed being active participants, even though problems sometimes occurred, such as coordination difficulties between the case manager and other healthcare professionals, and their feeling of being burdened. The spouses experienced the contact with the case manager as the most meaningful part of their participation, and the telephone contact with her as the most useful element of the intervention. The fact that not all spouses participated in all the available
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intervention elements could be explained by their feeling of being burdened and that they were not fully aware of what the intervention elements were.
Keywords: Case management, spouses, older adults, directed content analysis, security, fasttrack programme, total hip replacement, case manager.
INTRODUCTION Case management is a model for coordinating care for people with complex needs using elements such as advocating, planning, coordination, collaboration, assessing, and informing (Case Management Society of America, 2010). Case management has been used with success in care settings for older patients (Sandberg et al., 2015; Chow and Wong, 2014; Watt, 2001), but has not previously been added to orthopaedic fast-track programmes and is rarely used for interventions actively involving spouses or other informal caregivers (Hallberg and Kristensson, 2004). There is no consensus about what case management is and a wide range of models have been evaluated with variations in populations, outcomes and intervention content according to the specific aim of the studies (Hallberg and Kristensson, 2004). An evaluation of the effect of case management interventions can therefore be difficult due to lack of definition and content of case management and because the details of the case management interventions are seldom described (Sandberg et al., 2015). The complexity of case management implies the coordination of different services and the implementation of the comprehensive care elements in an integrated care trajectory (Hjelm et al., 2015). Case management is a complex intervention and therefore requires a mixed-method, stepwise evaluation to establish evidence (The Medical Research Council, 2010). Total hip replacements have been performed in fast-track programmes for the past 15 years (Harris and Sledge, 1990) as a way to enhance patient outcomes, such as
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recovery, pain medication, nutrition, and mobility through a multi-modal approach (Kehlet and Wilmore, 2008). The length of stay in Denmark is ideally 1-3 days (Husted et al., 2010) according to the fast-track program, but the median is three days (range 1 – 34), owing to preoperative cardiopulmonary disease, use of mobility aids prior to surgery, old age, and patients living alone (Jørgensen and Kehlet, 2013). Internationally length of stay is decreasing however still long compared to the Danish context and varies from a mean of 35 days in Japan to 13.9–14.3 days in Germany and 7.6 days in Scotland (den Hertog et al., 2012). Patients receiving total hip replacements are often over 70 years of age (49 %), and most are women (58 %) (The Danish Hip Alloplasty Register, 2013). The majority have been affected by severe pain and low mobility for several years prior to surgery (Kehlet and Wilmore, 2008), hence social support from municipal home care or relatives may often be needed. Relatives often have a need to be involved in patients’ healthcare experiences (Authors, 2014; Rutledge et al., 2000). A previously performed grounded-theory study (Authors, 2014) conceptualised how the relatives’ need to be involved in older patients’ fasttrack programmes during total hip or knee replacement was related to a desire to prevent the patients from feeling alone; they therefore engaged in protective behaviour. In a chronic healthcare setting, Rutledge and colleagues (2000) found that family members wished to be involved because they wanted to advocate for the patients’ best interests, monitor care and participate in the decision-making process, because they often had long-term responsibility for the patients. Social support provided by relatives before, during and after total joint replacement in fast-track treatment programmes has a significant effect on patient outcomes (Theiss et al., 2011; Kiefer, 2011). In 2015 (Authors, 2015a) a systematic review was conducted, where seven case management studies performed between 1997 and 2011 were
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found, involving informal caregivers to older patients. The studies indicated that case management showed high evidence of improvements in time taken for institutionalisation; there was moderate evidence of improvements to patient satisfaction, caregivers’ sense of competence and municipal care costs (Authors, 2015a). None of the studies took place in an orthopaedic or fast-track setting; hence support to informal caregivers needs to be evaluated through case management in these settings.
The SICAM-trial In 2014 a case management intervention was launched in Denmark. The SICAM-trial was developed, following the Medical Research Council (MRC) framework of developing and evaluating complex interventions (The Medical Research Council, 2010). It comprised a case management intervention directed towards spouses of older patients undergoing total hip replacements in a fast-track programme (Authors, 2015b; Authors, in review). A quasiexperimental design with a pre-test and repeated post-tests was chosen for the intervention. Participants consisting of spouse-patient dyads were recruited firstly to the control group (14 dyads) and subsequently to the intervention group (15 dyads). Data collection for both groups took place at the information seminar two weeks before patient admission and surgery (baseline), two-weeks after the patients’ discharge in the outpatient facilities for suture removal (follow-up one), and three months after discharge (follow-up 2). The spouses in the control group received usual care and information, consisting of participation in the information seminar and occasional participation in information meetings during admission. The spouses in the intervention group were assisted by a case manager from the information seminar in the period from two weeks prior to surgery, until suture removal two weeks after discharge. A nurse from the orthopaedic department specialising in fast-track trajectories was employed as case manager for the intervention. A pre-assessment interview was held between
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the spouse and the case manager during the information seminar to create an individually tailored plan about the spouses’ needs for involvement during the patients’ admission and after discharge. Apart from the four mandatory information meetings for the spouses, such as the pre-assessment interview, the individual discharge meeting, the follow-up telephone call and the final meeting at the time of the patients’ suture removal, spouses were also invited to participate in information meetings during admission, such as on the reception on the morning of surgery, physician rounds, and meetings with the physiotherapist. Apart from the planned follow-up telephone call from the case manager 3 to 4 days after discharge the spouses were also invited to contact the case manager at any time if questions should occur. Spouses and other informal caregivers are often invited to participate in hospital research projects and interventions in order to enhance our knowledge of a certain area. Knowledge about how spouses experience being involved in an intervention is sparse however relevant to clinical practice to inform us about their needs during their future participation in research. According to the MRC-framework, qualitative studies are important in the evaluation of complex interventions to establish evidence (The Medical Research Council, 2010). The aim of the study was therefore to explore and describe spouses’ experiences of participating in a case management intervention during older patients’ fasttrack total hip replacement programmes – and to discover which intervention elements they found useful.
METHODS Design Exploring and describing spouses’ experiences with case management guided us towards a descriptive design (Polit and Beck, 2008) using directed content analysis, which is commonly chosen when prior research could benefit from further description (Hsieh and Shannon,
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2005). The directed content analysis approach differs from classic content analysis by using a more descriptive approach of data adhering to the manifest level instead of an interpretive latent level (Hsieh and Shannon, 2005).
Participants The 15 spouses who participated in the SICAM trial’s intervention group were approached at the mandatory individual discharge meeting; they were invited to participate in an interview two weeks after the patients’ discharge, where the patients’ suture removal took place in the outpatient facilities. Five spouses declined the invitation because of symptoms of depression (n=1), heart failure (n=1) or cancellation of the patients’ operation (n=3). Eventually ten spouses agreed to participate in the study. The ten spouses consisted of seven men and three women with an average age of 71.2 years, ranging from 64 to 78 years. They had been married for 5.5 to 56 years, with a median range of 46 years (Table 1). All participants were retired.
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Data collection Data was collected by the first author through interviews using a semi-structured interview guide. The interviews were conducted two weeks after the patients’ discharge, at the time of suture removal in the outpatient facilities. The interviews took place in a secluded room in the outpatient facilities and the patients were not permitted to be at the interviews, although they had given consent for their spouses’ participation. The first author was not involved in daily care, nor did she perform the case management intervention. The risk of her influencing the spouses with prior relationships was therefore limited. During the early stages of the
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interviews the interviewer explained to the spouses the study purpose and her reasons for conducting the study. The interviews were guided by seven predetermined codes relevant to explore the spouses’ experiences of being involved in an intervention study, what they gained, what worked and what did not. The predetermined codes were therefore developed in consensus between the authors on the basis of these key concepts and variables that would support in validating and extending the prior research as described by Hsieh and Shannon (2005). The predetermined codes were addressed as open-ended questions and followed by probing with targeted questions about the specific intervention elements, such as: The day of inclusion, the morning of surgery, the period of admission, the discharge meeting, the telephone contact, the contact after suture removal, participating in rounds and the meeting with the physiotherapist. (The predetermined codes and questions are presented in Table 2).
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As data collection progressed we obtained ongoing knowledge about the participants’ excitement and experiences. Data reached saturation after the first nine participants, where no new knowledge appeared, however we chose to include the tenth participant for a full description of all participants’ experiences. All interviews were digitally-recorded and transcribed verbatim by the first author, resulting in a total of 53 pages and 128 minutes of recording.
Data analysis The data was analysed using directed content analysis, which is an approach to validate or extend existing research (Hsieh and Shannon, 2005). According to the method of directed
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content analysis (Hsieh and Shannon, 2005) the transcripts were initially read and analysed independently by both authors. On this level the spouses’ experiences and excitement about their relationship with the case manager and their feelings of safety through the contact were revealed. In the next reading, each author independently highlighted all text that was related to the spouses’ statements about the seven predetermined codes. These results were interpreted and compared by the authors and discussed in order to reach a mutual understanding of the text and the predetermined codes, thus establishing a consistent approach. After analysing data from the interviews we decided to present the findings in an amalgamated version of five codes for a more intelligible presentation. The predetermined codes of ‘Involvement by case manager’ and ‘Most meaningful part of participating’ were combined and so were the codes of ‘Problematic issues’ and ‘Changes to be made’. The predetermined codes of ‘Spouses’ overall experience of participating in the intervention’, ‘The spouses’ role as active participant’ and ‘Specific intervention elements that were found to be useful’ were not combined.
Methodological considerations To ensure rigor and trustworthiness in our study the COREQ guidelines (Tong et al., 2007) were followed, as well as Lincoln and Guba’s (1985) approach for establishing trustworthiness of qualitative data, to address credibility, dependability, transferability and conformability. To increase credibility both authors contributed to data analysis and a discussion about the patterns of the predetermined codes. It was sometimes difficult for the spouses to describe the features of the intervention and this may have been caused by a lack of information during the intervention. To support dependability, a thorough description of the research method was conducted to enhance the possibilities of replication. To increase transferability the setting and participant characteristics were described.
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ETHICAL CONSIDERATIONS The Danish Data Protection Agency approved the (J.nr. 2013-41-2202) and the National Committee on Health Research Ethics was presented with the study and found formal evaluation to be unnecessary. Prior to data collection the spouses were given oral and written information about the study aim and objectives, their level of participation, and their ethical rights to refuse to participate, resign from participation, rights of anonymity and confidentiality. All spouses gave written informed consent to participate prior to allocation to the study and all patients consented to having their spouses participate in the study. FINDINGS The main finding of the analysis showed that the spouses experienced a sense of security by participating in the case management intervention during older patients’ fast-track total hip replacement programmes. The sense of security was experienced by the spouses through the close relationship with the case manager, her constant availability at the hospital and by telephone and her provision of information, interest and personal contact. The findings are described according to the spouses’ experiences according to the predetermined codes (Table 2).
Spouses’ overall experience of participating in the intervention Most of the spouses participated in order to learn something new and to be even further involved in the patients’ care trajectory. The spouses did not have any expectations of their amount of involvement. However they found it interesting to participate in the planned information meetings and they enjoyed the opportunity of experiencing the entire trajectory from A to Z. One spouse said:
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Well I haven’t thought that much about my expectations however it was kind of served to me. I think it was wonderful to know that my presence was permitted at the rounds and the meeting with the physiotherapist. I mean you have created a plan for what you think it should be like (…) so I feel very satisfied (spouse 6)
Another spouse stated:
It has given me the opportunity of being present more than you normally experience as a relative (Spouse 5)
One spouse did not experience involvement on this level as new and compared it to a similar prior hospital admission some years earlier in the cardiology department. Another spouse described her experience of participating as something she was doing for our benefit to help in the research procedure – not as an advantage for her.
Involvement by case manager – the most meaningful part of participating The connection with and involvement of the case manager was perceived by the spouses as the most meaningful part of their participation. Her winning personality made it easy for the spouses to collaborate with her and trust her. She gave them a feeling of comfort and safety during the intervention.
She’s a wonderful person and good at her job. Very kind and you never feel in the way. You feel good in her presence (Spouse 6)
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When asked more directly about specific situations where the case manager’s presence was especially appreciated, the spouses mentioned her constant availability both in the hospital and over the telephone. They also mentioned her ability to listen to their problems, her explanations of the information they were given and how she managed to arrange everything with the other healthcare professionals. A spouse described her availability as such:
And she always said that if you have any problems just call me, right? And that has been very comforting. I will admit to that. We are not spring chickens anymore (Spouse 2)
One spouse used the availability of the case manager to contact her when his wife fell in their home after discharge – she helped him get his wife to the hospital. This availability was also explained by the spouses as a privilege, especially as they only had one contact nurse and not several as in their prior admissions.
There’s one thing that we were especially pleased with and that was that we had one particular person we could contact and not suddenly a second and a third. You should really develop that part further. They know us and we know her and that’s extremely important (Spouse 7)
The spouses did not find the contact with the regular nurses very awarding or helpful because they put all their faith in the case manager. The spouses also considered the idea that they were even more involved in the patients’ care trajectory because of their contact with the case manager, than they would have been in a normal fast-track trajectory.
Problematic issues and changes to be made
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The spouses expressed some concerns regarding problematic issues during the intervention. The issues that were related to the intervention were the occasional problems of coordination with the case manager and the healthcare professionals. One spouse was concerned because the case manager missed two planned meetings due to illness when he needed to talk to her about the patients’ current problems. Another spouse was cross about missing the planned information meeting with the physiotherapist because of failed coordination, having looked forward to it.
So I had been here from 9 to 12 because of the meeting with the physiotherapist which I DIDN’T (highlighted by the spouses) attend. They didn’t know I was coming and I had made the arrangements with the case manager but the physiotherapist didn’t know (Spouse 8)
Other problems perceived by the spouses were lack of information at the discharge meeting, where one spouse was not sure of her actions concerning medication (the number of pills her husband should take and when he should stop taking the pain medication). Another spouse was not given enough information about changing the patient’s dressing and found herself in difficulties at home when trying to change it herself. One spouse were also dissatisfied with the planned information meetings being very short and one spouse was displeased with the short hospital stay, even though she realised afterwards that it had been a good decision:
It went very fast I remember and it was about 12 o’clock and I didn’t suspect that she was going home until the afternoon. But we were happy (Spouse 3)
When asked about what could have been done differently the spouses replied that they found everything in order and that they wouldn’t change a thing.
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The spouses’ role as active participant When asked how they felt about being active caregivers the spouses replied that it was not out of the ordinary and that is was a very natural thing to support your loved ones when they needed you. They described being actively involved as a family thing and that it was obvious not to let anyone feel stranded when admitted to the hospital. As one spouse said:
There are many things that we don’t do together but if something happens we all come together. Then we have the family (…) It’s not something that we (laughs). We are all involved if something happens to one of us. That’s how I will put it (Spouse 1)
Some of the spouses had to do additional housework during the patients’ hospital stay and recovery period. One had been involved in his wife’s care trajectory for years because she suffered from another illness: he explained the thrill of having a contact person just for him.
The spouses were asked how they thought the patients felt about having them involved as active participants: they suspected that the patients felt safe and comfortable about it. One spouse was very happy to have been selected for participation, but was not sure her husband wanted her to participate. She explained her concerns like this:
When we were selected I thought Woohoo! And I really wanted to. However my husband is very private and wants to do everything by himself so I thought he might say no. But he didn’t and I was really happy (…) because you don’t want to sit at home thinking about what now and what do we do and what if he missed something (Spouse 6)
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However, not all spouses shared the same positive view of being active participators. They were very dedicated in supporting the patients, but it was sometimes a struggle: the patient was often tired and in no mood for exercise when the spouse initiated some training. It was also a burden to the male spouse due to the increased burden of housework, because it was usually the wife’s role and because they felt they always had to be prepared to help. Some of these male spouses also missed several hours of sleep at night due to concerns for their wife’s well-being and because they assisted with bathroom visits two to three times per night. The burden and lack of sleep led to feeling stressed in some cases:
I would have done it anyway. I would have had to. Inevitably. I’m really stressed and I don’t get much sleep at night because every time she moves – I’m up! (Spouse 4)
Another spouse also felt stressed by the fact that he was unable to be at his wife’s side all hours of the day, which had its consequences:
There was one time when I wasn’t quick enough to provide assistance and then she was mad at me (…) She was going to take a bath and I wasn’t close by to help her with her socks which was stupid of me but we had just agreed that the house needed cleaning so I was running around with the hoover. I didn’t hear her (Spouse 5)
Specific intervention elements that were found to be useful Apart from the face-to-face contact with the case manager, the most important element in the intervention was the telephone contact with the case manager. Not all spouses used this offer, but they were all glad to have the opportunity if they needed to talk to her. The spouses who called the case manager often had specific health issues related to the patient, such as
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constipation, pain medication, changing the dressing and when they had forgotten something at the hospital.
I was very happy that there was a line back to the ward because my husband was constipated. And then I needed to call the case manager who guided me though it and told me what to do. It was really nice. It has been excellent! (Spouse 3)
They were also pleased by the follow-up telephone call arranged by the case manager four days after the patients’ discharge, because then they could talk to her about current issues in the home. They also found time to talk about more specific issues during this telephone call; discussions about the patients’ pain medicine were particularly important to them. The other elements in the intervention, such as participating at the planned information meetings of the rounds with the surgeon, meeting the physiotherapist and the discharge meeting were not so important to the spouses. They enjoyed listening to the information because, as one spouse said:
It’s really quite exciting to hear and now we are two people who have heard the information if there are any doubts when we get home (Spouse 5)
The spouses described the meetings as nice and a pleasure to attend but were not able to say specifically what they liked about attending.
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DISCUSSION To investigate our study aim, interviews were conducted with spouses from the intervention group in our case management intervention (The SICAM-trial). When participating in the case management intervention the spouses found the collaboration with the case manager and the sense of security she provided through her availability and personality as the most meaningful part. Our findings were similar to an early American survey where Malone Beach and colleagues (MaloneBeach et al., 1992) found caregivers’ perceptions of case management to be an important aspect of the satisfaction of having a special relationship with a person who provided emotional care and navigated the caregivers through the system. A Swedish phenomenological study (Hjelm et al., 2015) found similar results when they explored the understanding of importance of case managers to family members of older persons. The sub-theme “Helps me feel secure – Experiencing a trusting relationship” deepened their understanding of relatives’ perception of case managers as providing comfort and having good intentions in giving support (Hjelm et al., 2015). Feeling secure and having someone to turn to are considered important features of case management. A qualitative study of Sandberg and colleagues (Sandberg et al., 2014) described how patients in a case management study experienced the case manager as a safety net. The spouses in our study were pleased with the availability of the case manager and they described how the most useful element of the case management intervention was the sense of security that there was always the possibility of contacting the case manager over the telephone. However, not all spouses felt the need to contact the case manager over the telephone owing to a lack of acute problems. Hjelm and colleagues (2015) also described that even though the family members did not feel a need to contact the case manager; they felt secure knowing that they could always reach her by telephone. The spouses in our study
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explained that it was the mere possibility of knowing they had a direct line to someone at the hospital that knew them and could answer their queries if any. The other elements of our case management intervention, in relation to the spouses’ participation in the planned information meetings with the patient and the healthcare professionals, were not mentioned as a particular need for the spouses. The spouses were satisfied with the intervention offers but not all chose to participate in all the planned information meetings, even though they were invited and encouraged to participate. This was an uncommon finding, since most studies conclude how the relatives often feel uninformed (Almborg et al., 2009), uninvolved in patient care (Ericsson and Lauri, 2000) and uninvolved in decision-making (Ho, 2008). The reasons for not participating in all the intervention offers could be that the spouses sometimes felt burdened due to their active involvement, which resulted in loss of sleep and feeling stressed. They worried about their loved ones’ health and well-being and tried to be available for their spouse at all times of the day. Similar results with regard to relatives’ protecting behaviour in relation to older patients in orthopaedic fasttrack programmes were found by the first author and colleagues (Authors, 2014) in a grounded theory study, where the relatives preserved the patients’ values and integrity through loving care, while worrying about how to manage the practical issues that occurred. Even though the findings of our study showed that spouses were feeling burdened with additional practical issues at home and at the hospital it was not directly related to the intervention. However it is still considered as an important aspect and consequence of older spouses’ active participation in family members’ hospitalisation. Another reason for the spouses’ lack of participation in all aspects of the intervention could be a lack of information about the procedural elements specific to the intervention. Case management interventions are often complex, comprising several elements, and during the interviews the spouses occasionally had difficulties describing what the case manager had done that distinguished
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her actions from usual care. No studies were found describing spouses’, relatives’ or informal caregivers’ lack of participation. However, two studies were found regarding patients’ barriers for their relatives’ participation in family care intervention studies: patients tended to try to protect their relatives from worries derived from participation (Spoth et al., 1996; Ammari et al., 2015). Whether the spouses participated in all the intervention elements or just some of them, they stated that their involvement was a natural thing and that it was a given that you supported your family through trying times. However, it was difficult to grasp whether this help was provided (or increased) because of the intervention and the case manager’s presence, or whether they would have been involved anyway. Other studies conclude how informal caregivers, such as family and relatives, often have a great desire to be involved in patients’ care and treatment (Dreyer et al., 2009; Weman and Fagerberg, 2006) and studies show that informal caregivers play an important role in the care of their elderly family members by providing practical and emotional support before, during and after hospitalisation (Authors, 2014; Hertzberg et al., 2003). In a former grounded theory study, loving was found as the key determinant for the relatives to be involved in the older patients’ fast-track programmes after total hip replacement and the thought of the patient going through invasive surgery alone was inconceivable (Authors, 2014). Even though the spouses may have different intentions for participating in the intervention they were positive about being involved, having a special contact person in the shape of a case manager and being able to attend all the meetings they desired. In this study we used a descriptive design with directed content analysis based on participants who were initially included in a prior study (The SICAM-trial). The study could therefore have been limited by too few participants in order to reach data saturation.
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The strength of the study was however that the participants had great knowledge about the study subject so the study aim could be elaborated.
CONCLUSION The study showed that the spouses experienced the personal face-to-face contact and constant availability of the case manager as the most meaningful part of their participation. The telephone contact with the case manager was experienced by the spouses as the most useful element of the case management intervention. The overall sense of security was found to be the availability of the case manager for information and support both during hospitalisation and the possibility of contacting her by telephone whenever they needed advice or information. Other elements of the intervention such as participating at information meeting were not found relevant by the spouses – however a nice opportunity for involvement. The knowledge derived from this study can be useful for healthcare professionals in clinical practice when involving spouses and other informal caregivers in older patients’ fast-track programs to keep in mind the necessity of being available for questions and support both during admission and after discharge. The case manager in our study was employed to perform the intervention. However future research is needed through implementation studies to explore how the case managers’ role and functions related to the case management elements can be transitioned to the patients’ contact nurse as a part of her daily task.
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ACKNOWLEDGEMENTS We would like to thank the participating spouses for contributing with their knowledge and experience.
CONFLICT OF INTERESTS No conflict of interest has been declared by the authors
ETHICAL APPROVAL The Danish Data Protection Agency approved the (J.nr. 2013-41-2202) and the National Committee on Health Research Ethics was presented with the study and found formal evaluation to be unnecessary.
FUNDING SOURCE The study is a part of first authors post doctoral research project: The SICAM-trial: Spouses’ Involvement through Case Management. Improving older patients’ post-discharge functional status after total hip replacement in fast-track programmes. The project has been funded by The NOVO Nordic Foundation with a post doctoral fellowship grant (http://www.novonordiskfonden.dk/en/grantrecipients?field_date_value%5Bvalue%5D%5By ear%5D=2012&field_date_value_1%5Bvalue%5D%5Byear%5D=2013&field_related_cente r_tid=90&keys=&=Search) and by the Health Scientific Research Foundation of Region Sealand, Denmark through three research grants.
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Kehlet, H., Wilmore, D.W., 2008. Evidence-based surgical care and the evolution of fasttrack surgery. Annals of Surgery 248, 189-198.
Kiefer, R.A., 2011. The effect of social support on functional recovery and well-being in older adults following joint arthroplasty. Rehabilitation Nursing 36, 120-126.
Lincoln, Y.S., Guba, E.A., 1985. Naturalistic inquiry. Sage, Beverly Hills, U.S.A.
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MaloneBeach, E.E., Zarit, S.H., Spore, D.L., 1992. Caregivers’ perceptions of case management and community-based services: Barriers to service use. Journal of Applied Gerontology 11, 146-159.
Polit, D.F., Beck, C.T., 2008. Nursing research. Generating and Assessing Evidence for Nursing Practice. Lippincott, Williams & Wilkins, USA.
Rutledge, D.N., Donaldson, N.E., Pravikoff, D.S., 2000. Caring for families of patients in acute or chronic health care settings: part I - principles. Online Journal of Clinical Innovations 3, 1-26.
Sandberg, M., Jakobsson, U., Midlöv, P., Kristensson, J., 2014. Case management for frail older people – a qualitative study of receivers’ and providers’ experiences of a complex intervention. BMC Health Service Research 14,14.
Sandberg, M., Kristensson, J., Midlöv, P., Jakobsson, U., 2015. Effects on healthcare utilization of case management for frail older people: A randomized controlled trial (RCT). Archives of Gerontology and Geriatrics 60, 71-81.
Spoth, R., Redmond, C., Hockaday, C., Shin, C.Y., 1996. Barriers to participation in family skills preventive interventions and their evaluations. A replication and extension. Family Relations 45, 247-254.
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The Danish Hip Alloplasty Register, 2013. Annual Rapport 2013 [Danish: Årsrapport 2013). Retrieved from: http://www.dhr.dk/Ny%20mappe/rapporter/DHR%20%C3%A5rsrapport%202013_full%20v ersionfinal_.pdf
Theiss, M.M., Ellison, M.W., Tea, C.G., Warner, J.F., Silver, R.M., Murphy, V.J., 2011. The connection between strong social support and joint replacement outcomes. Orthopedics 34, e50-e58.
The Medical Research Council, 2010. Developing and evaluating complex interventions: A new Guidance. Retrived at: http://www.mrc.ac.uk/documents/pdf/complex-interventionsguidance/
Tong, A., Sainsbury, P., Craig, J., 2007. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Internation Journal of Qualitative Health Care 19, 349-357.
Watt, H.M., 2001. Community-based case management: a model for outcome-based research for noninstitutionalized elderly. Home Health Care Services Quarterly 20, 39-65.
Weman, K., Fagerberg, I., 2006. Registered Nurses working together with family members of older people. Journal of Clinical Nursing 15, 281-89.
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TABLES Table 1: Characteristics of participating spouses Spouse
Age
Sex
Married for (years)
Educational level
1
69
Male
45
Practical training
2
64
Male
19
Practical training
3
77
Female
56
High school
4
69
Male
48
University
5
69
Male
43
University
6
70
Female
5.5
Practical training
7
78
Male
56
College
8
75
Male
54
Primary school
9
71
Female
47
College
10
70
Male
44
High school
Table 2: The predetermined codes and questions at the interviews Predetermined codes
Open-ended question
Targeted questions
3
Most meaningful part of participating
4 5 6
Problematic issues Changes to be made The spouses’ role as an active participant Specific intervention elements that were found to be useful
What was your overall experience with participating in the intervention? How did you experience being involved by the case manager? What has been the most meaningful part of the experience? What was considered as problematic? What could have been done differently? How do you feel about being an active caregiver? And which part of the case management intervention did you find most useful?
-
2
Spouses’ overall experience of participating in the intervention Involvement by case manager
1
7
The day of inclusion The morning of surgery The period of admission The discharge meeting The telephone contact The contact after suture removal The rounds The meeting with the physiotherapist.
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S1878-1241(16)30061-2 http://dx.doi.org/doi: 10.1016/j.ijotn.2016.06.002 IJOTN 276
To appear in:
International Journal of Orthopaedic and Trauma Nursing
Please cite this article as: Connie Bøttcher Berthelsen, Jimmie Kristensson, A sense of security: spouses' experiences of participating in an orthopaedic case management intervention (the SICAM-trial), International Journal of Orthopaedic and Trauma Nursing (2016), http://dx.doi.org/doi: 10.1016/j.ijotn.2016.06.002. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
A sense of security: Spouses’ experiences of participating in an orthopaedic case management intervention (The SICAM-trial)
First and corresponding author Connie Bøttcher (CB) Berthelsen RN, MScN, PhD Assistant Professor Section of Nursing Institute of Health Science Aarhus University Denmark
Contact address: Tuborgvej 164, entrance B8 2400 Kbh NV Denmark
Daytime contact telephone number: +4587167875 E-mail address: [email protected]
Last author Jimmie Kristensson RN, MScN, PhD Associate Professor Institute of Health Sciences
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Faculty of Medicine Lund University Sweden E-mail: [email protected]
Department of Health Blekinge Institute of Technology Karlskrona University Sweden
ABSTRACT The aim of the study was to explore and describe spouses’ experiences of participating in a case management intervention during older patients’ fast-track programme having total hip replacement – and which intervention elements they found useful. Data were collected through qualitative interviews with 10 spouses from the intervention group of the SICAMtrial, directed by predetermined codes based on elements of the intervention. Data were analysed by both authors using directed content analysis. The results showed that the spouses were very pleased about being a part of the case management intervention. They enjoyed being active participants, even though problems sometimes occurred, such as coordination difficulties between the case manager and other healthcare professionals, and their feeling of being burdened. The spouses experienced the contact with the case manager as the most meaningful part of their participation, and the telephone contact with her as the most useful element of the intervention. The fact that not all spouses participated in all the available
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intervention elements could be explained by their feeling of being burdened and that they were not fully aware of what the intervention elements were.
Keywords: Case management, spouses, older adults, directed content analysis, security, fasttrack programme, total hip replacement, case manager.
INTRODUCTION Case management is a model for coordinating care for people with complex needs using elements such as advocating, planning, coordination, collaboration, assessing, and informing (Case Management Society of America, 2010). Case management has been used with success in care settings for older patients (Sandberg et al., 2015; Chow and Wong, 2014; Watt, 2001), but has not previously been added to orthopaedic fast-track programmes and is rarely used for interventions actively involving spouses or other informal caregivers (Hallberg and Kristensson, 2004). There is no consensus about what case management is and a wide range of models have been evaluated with variations in populations, outcomes and intervention content according to the specific aim of the studies (Hallberg and Kristensson, 2004). An evaluation of the effect of case management interventions can therefore be difficult due to lack of definition and content of case management and because the details of the case management interventions are seldom described (Sandberg et al., 2015). The complexity of case management implies the coordination of different services and the implementation of the comprehensive care elements in an integrated care trajectory (Hjelm et al., 2015). Case management is a complex intervention and therefore requires a mixed-method, stepwise evaluation to establish evidence (The Medical Research Council, 2010). Total hip replacements have been performed in fast-track programmes for the past 15 years (Harris and Sledge, 1990) as a way to enhance patient outcomes, such as
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recovery, pain medication, nutrition, and mobility through a multi-modal approach (Kehlet and Wilmore, 2008). The length of stay in Denmark is ideally 1-3 days (Husted et al., 2010) according to the fast-track program, but the median is three days (range 1 – 34), owing to preoperative cardiopulmonary disease, use of mobility aids prior to surgery, old age, and patients living alone (Jørgensen and Kehlet, 2013). Internationally length of stay is decreasing however still long compared to the Danish context and varies from a mean of 35 days in Japan to 13.9–14.3 days in Germany and 7.6 days in Scotland (den Hertog et al., 2012). Patients receiving total hip replacements are often over 70 years of age (49 %), and most are women (58 %) (The Danish Hip Alloplasty Register, 2013). The majority have been affected by severe pain and low mobility for several years prior to surgery (Kehlet and Wilmore, 2008), hence social support from municipal home care or relatives may often be needed. Relatives often have a need to be involved in patients’ healthcare experiences (Authors, 2014; Rutledge et al., 2000). A previously performed grounded-theory study (Authors, 2014) conceptualised how the relatives’ need to be involved in older patients’ fasttrack programmes during total hip or knee replacement was related to a desire to prevent the patients from feeling alone; they therefore engaged in protective behaviour. In a chronic healthcare setting, Rutledge and colleagues (2000) found that family members wished to be involved because they wanted to advocate for the patients’ best interests, monitor care and participate in the decision-making process, because they often had long-term responsibility for the patients. Social support provided by relatives before, during and after total joint replacement in fast-track treatment programmes has a significant effect on patient outcomes (Theiss et al., 2011; Kiefer, 2011). In 2015 (Authors, 2015a) a systematic review was conducted, where seven case management studies performed between 1997 and 2011 were
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found, involving informal caregivers to older patients. The studies indicated that case management showed high evidence of improvements in time taken for institutionalisation; there was moderate evidence of improvements to patient satisfaction, caregivers’ sense of competence and municipal care costs (Authors, 2015a). None of the studies took place in an orthopaedic or fast-track setting; hence support to informal caregivers needs to be evaluated through case management in these settings.
The SICAM-trial In 2014 a case management intervention was launched in Denmark. The SICAM-trial was developed, following the Medical Research Council (MRC) framework of developing and evaluating complex interventions (The Medical Research Council, 2010). It comprised a case management intervention directed towards spouses of older patients undergoing total hip replacements in a fast-track programme (Authors, 2015b; Authors, in review). A quasiexperimental design with a pre-test and repeated post-tests was chosen for the intervention. Participants consisting of spouse-patient dyads were recruited firstly to the control group (14 dyads) and subsequently to the intervention group (15 dyads). Data collection for both groups took place at the information seminar two weeks before patient admission and surgery (baseline), two-weeks after the patients’ discharge in the outpatient facilities for suture removal (follow-up one), and three months after discharge (follow-up 2). The spouses in the control group received usual care and information, consisting of participation in the information seminar and occasional participation in information meetings during admission. The spouses in the intervention group were assisted by a case manager from the information seminar in the period from two weeks prior to surgery, until suture removal two weeks after discharge. A nurse from the orthopaedic department specialising in fast-track trajectories was employed as case manager for the intervention. A pre-assessment interview was held between
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the spouse and the case manager during the information seminar to create an individually tailored plan about the spouses’ needs for involvement during the patients’ admission and after discharge. Apart from the four mandatory information meetings for the spouses, such as the pre-assessment interview, the individual discharge meeting, the follow-up telephone call and the final meeting at the time of the patients’ suture removal, spouses were also invited to participate in information meetings during admission, such as on the reception on the morning of surgery, physician rounds, and meetings with the physiotherapist. Apart from the planned follow-up telephone call from the case manager 3 to 4 days after discharge the spouses were also invited to contact the case manager at any time if questions should occur. Spouses and other informal caregivers are often invited to participate in hospital research projects and interventions in order to enhance our knowledge of a certain area. Knowledge about how spouses experience being involved in an intervention is sparse however relevant to clinical practice to inform us about their needs during their future participation in research. According to the MRC-framework, qualitative studies are important in the evaluation of complex interventions to establish evidence (The Medical Research Council, 2010). The aim of the study was therefore to explore and describe spouses’ experiences of participating in a case management intervention during older patients’ fasttrack total hip replacement programmes – and to discover which intervention elements they found useful.
METHODS Design Exploring and describing spouses’ experiences with case management guided us towards a descriptive design (Polit and Beck, 2008) using directed content analysis, which is commonly chosen when prior research could benefit from further description (Hsieh and Shannon,
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2005). The directed content analysis approach differs from classic content analysis by using a more descriptive approach of data adhering to the manifest level instead of an interpretive latent level (Hsieh and Shannon, 2005).
Participants The 15 spouses who participated in the SICAM trial’s intervention group were approached at the mandatory individual discharge meeting; they were invited to participate in an interview two weeks after the patients’ discharge, where the patients’ suture removal took place in the outpatient facilities. Five spouses declined the invitation because of symptoms of depression (n=1), heart failure (n=1) or cancellation of the patients’ operation (n=3). Eventually ten spouses agreed to participate in the study. The ten spouses consisted of seven men and three women with an average age of 71.2 years, ranging from 64 to 78 years. They had been married for 5.5 to 56 years, with a median range of 46 years (Table 1). All participants were retired.
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Data collection Data was collected by the first author through interviews using a semi-structured interview guide. The interviews were conducted two weeks after the patients’ discharge, at the time of suture removal in the outpatient facilities. The interviews took place in a secluded room in the outpatient facilities and the patients were not permitted to be at the interviews, although they had given consent for their spouses’ participation. The first author was not involved in daily care, nor did she perform the case management intervention. The risk of her influencing the spouses with prior relationships was therefore limited. During the early stages of the
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interviews the interviewer explained to the spouses the study purpose and her reasons for conducting the study. The interviews were guided by seven predetermined codes relevant to explore the spouses’ experiences of being involved in an intervention study, what they gained, what worked and what did not. The predetermined codes were therefore developed in consensus between the authors on the basis of these key concepts and variables that would support in validating and extending the prior research as described by Hsieh and Shannon (2005). The predetermined codes were addressed as open-ended questions and followed by probing with targeted questions about the specific intervention elements, such as: The day of inclusion, the morning of surgery, the period of admission, the discharge meeting, the telephone contact, the contact after suture removal, participating in rounds and the meeting with the physiotherapist. (The predetermined codes and questions are presented in Table 2).
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As data collection progressed we obtained ongoing knowledge about the participants’ excitement and experiences. Data reached saturation after the first nine participants, where no new knowledge appeared, however we chose to include the tenth participant for a full description of all participants’ experiences. All interviews were digitally-recorded and transcribed verbatim by the first author, resulting in a total of 53 pages and 128 minutes of recording.
Data analysis The data was analysed using directed content analysis, which is an approach to validate or extend existing research (Hsieh and Shannon, 2005). According to the method of directed
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content analysis (Hsieh and Shannon, 2005) the transcripts were initially read and analysed independently by both authors. On this level the spouses’ experiences and excitement about their relationship with the case manager and their feelings of safety through the contact were revealed. In the next reading, each author independently highlighted all text that was related to the spouses’ statements about the seven predetermined codes. These results were interpreted and compared by the authors and discussed in order to reach a mutual understanding of the text and the predetermined codes, thus establishing a consistent approach. After analysing data from the interviews we decided to present the findings in an amalgamated version of five codes for a more intelligible presentation. The predetermined codes of ‘Involvement by case manager’ and ‘Most meaningful part of participating’ were combined and so were the codes of ‘Problematic issues’ and ‘Changes to be made’. The predetermined codes of ‘Spouses’ overall experience of participating in the intervention’, ‘The spouses’ role as active participant’ and ‘Specific intervention elements that were found to be useful’ were not combined.
Methodological considerations To ensure rigor and trustworthiness in our study the COREQ guidelines (Tong et al., 2007) were followed, as well as Lincoln and Guba’s (1985) approach for establishing trustworthiness of qualitative data, to address credibility, dependability, transferability and conformability. To increase credibility both authors contributed to data analysis and a discussion about the patterns of the predetermined codes. It was sometimes difficult for the spouses to describe the features of the intervention and this may have been caused by a lack of information during the intervention. To support dependability, a thorough description of the research method was conducted to enhance the possibilities of replication. To increase transferability the setting and participant characteristics were described.
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ETHICAL CONSIDERATIONS The Danish Data Protection Agency approved the (J.nr. 2013-41-2202) and the National Committee on Health Research Ethics was presented with the study and found formal evaluation to be unnecessary. Prior to data collection the spouses were given oral and written information about the study aim and objectives, their level of participation, and their ethical rights to refuse to participate, resign from participation, rights of anonymity and confidentiality. All spouses gave written informed consent to participate prior to allocation to the study and all patients consented to having their spouses participate in the study. FINDINGS The main finding of the analysis showed that the spouses experienced a sense of security by participating in the case management intervention during older patients’ fast-track total hip replacement programmes. The sense of security was experienced by the spouses through the close relationship with the case manager, her constant availability at the hospital and by telephone and her provision of information, interest and personal contact. The findings are described according to the spouses’ experiences according to the predetermined codes (Table 2).
Spouses’ overall experience of participating in the intervention Most of the spouses participated in order to learn something new and to be even further involved in the patients’ care trajectory. The spouses did not have any expectations of their amount of involvement. However they found it interesting to participate in the planned information meetings and they enjoyed the opportunity of experiencing the entire trajectory from A to Z. One spouse said:
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Well I haven’t thought that much about my expectations however it was kind of served to me. I think it was wonderful to know that my presence was permitted at the rounds and the meeting with the physiotherapist. I mean you have created a plan for what you think it should be like (…) so I feel very satisfied (spouse 6)
Another spouse stated:
It has given me the opportunity of being present more than you normally experience as a relative (Spouse 5)
One spouse did not experience involvement on this level as new and compared it to a similar prior hospital admission some years earlier in the cardiology department. Another spouse described her experience of participating as something she was doing for our benefit to help in the research procedure – not as an advantage for her.
Involvement by case manager – the most meaningful part of participating The connection with and involvement of the case manager was perceived by the spouses as the most meaningful part of their participation. Her winning personality made it easy for the spouses to collaborate with her and trust her. She gave them a feeling of comfort and safety during the intervention.
She’s a wonderful person and good at her job. Very kind and you never feel in the way. You feel good in her presence (Spouse 6)
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When asked more directly about specific situations where the case manager’s presence was especially appreciated, the spouses mentioned her constant availability both in the hospital and over the telephone. They also mentioned her ability to listen to their problems, her explanations of the information they were given and how she managed to arrange everything with the other healthcare professionals. A spouse described her availability as such:
And she always said that if you have any problems just call me, right? And that has been very comforting. I will admit to that. We are not spring chickens anymore (Spouse 2)
One spouse used the availability of the case manager to contact her when his wife fell in their home after discharge – she helped him get his wife to the hospital. This availability was also explained by the spouses as a privilege, especially as they only had one contact nurse and not several as in their prior admissions.
There’s one thing that we were especially pleased with and that was that we had one particular person we could contact and not suddenly a second and a third. You should really develop that part further. They know us and we know her and that’s extremely important (Spouse 7)
The spouses did not find the contact with the regular nurses very awarding or helpful because they put all their faith in the case manager. The spouses also considered the idea that they were even more involved in the patients’ care trajectory because of their contact with the case manager, than they would have been in a normal fast-track trajectory.
Problematic issues and changes to be made
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The spouses expressed some concerns regarding problematic issues during the intervention. The issues that were related to the intervention were the occasional problems of coordination with the case manager and the healthcare professionals. One spouse was concerned because the case manager missed two planned meetings due to illness when he needed to talk to her about the patients’ current problems. Another spouse was cross about missing the planned information meeting with the physiotherapist because of failed coordination, having looked forward to it.
So I had been here from 9 to 12 because of the meeting with the physiotherapist which I DIDN’T (highlighted by the spouses) attend. They didn’t know I was coming and I had made the arrangements with the case manager but the physiotherapist didn’t know (Spouse 8)
Other problems perceived by the spouses were lack of information at the discharge meeting, where one spouse was not sure of her actions concerning medication (the number of pills her husband should take and when he should stop taking the pain medication). Another spouse was not given enough information about changing the patient’s dressing and found herself in difficulties at home when trying to change it herself. One spouse were also dissatisfied with the planned information meetings being very short and one spouse was displeased with the short hospital stay, even though she realised afterwards that it had been a good decision:
It went very fast I remember and it was about 12 o’clock and I didn’t suspect that she was going home until the afternoon. But we were happy (Spouse 3)
When asked about what could have been done differently the spouses replied that they found everything in order and that they wouldn’t change a thing.
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The spouses’ role as active participant When asked how they felt about being active caregivers the spouses replied that it was not out of the ordinary and that is was a very natural thing to support your loved ones when they needed you. They described being actively involved as a family thing and that it was obvious not to let anyone feel stranded when admitted to the hospital. As one spouse said:
There are many things that we don’t do together but if something happens we all come together. Then we have the family (…) It’s not something that we (laughs). We are all involved if something happens to one of us. That’s how I will put it (Spouse 1)
Some of the spouses had to do additional housework during the patients’ hospital stay and recovery period. One had been involved in his wife’s care trajectory for years because she suffered from another illness: he explained the thrill of having a contact person just for him.
The spouses were asked how they thought the patients felt about having them involved as active participants: they suspected that the patients felt safe and comfortable about it. One spouse was very happy to have been selected for participation, but was not sure her husband wanted her to participate. She explained her concerns like this:
When we were selected I thought Woohoo! And I really wanted to. However my husband is very private and wants to do everything by himself so I thought he might say no. But he didn’t and I was really happy (…) because you don’t want to sit at home thinking about what now and what do we do and what if he missed something (Spouse 6)
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However, not all spouses shared the same positive view of being active participators. They were very dedicated in supporting the patients, but it was sometimes a struggle: the patient was often tired and in no mood for exercise when the spouse initiated some training. It was also a burden to the male spouse due to the increased burden of housework, because it was usually the wife’s role and because they felt they always had to be prepared to help. Some of these male spouses also missed several hours of sleep at night due to concerns for their wife’s well-being and because they assisted with bathroom visits two to three times per night. The burden and lack of sleep led to feeling stressed in some cases:
I would have done it anyway. I would have had to. Inevitably. I’m really stressed and I don’t get much sleep at night because every time she moves – I’m up! (Spouse 4)
Another spouse also felt stressed by the fact that he was unable to be at his wife’s side all hours of the day, which had its consequences:
There was one time when I wasn’t quick enough to provide assistance and then she was mad at me (…) She was going to take a bath and I wasn’t close by to help her with her socks which was stupid of me but we had just agreed that the house needed cleaning so I was running around with the hoover. I didn’t hear her (Spouse 5)
Specific intervention elements that were found to be useful Apart from the face-to-face contact with the case manager, the most important element in the intervention was the telephone contact with the case manager. Not all spouses used this offer, but they were all glad to have the opportunity if they needed to talk to her. The spouses who called the case manager often had specific health issues related to the patient, such as
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constipation, pain medication, changing the dressing and when they had forgotten something at the hospital.
I was very happy that there was a line back to the ward because my husband was constipated. And then I needed to call the case manager who guided me though it and told me what to do. It was really nice. It has been excellent! (Spouse 3)
They were also pleased by the follow-up telephone call arranged by the case manager four days after the patients’ discharge, because then they could talk to her about current issues in the home. They also found time to talk about more specific issues during this telephone call; discussions about the patients’ pain medicine were particularly important to them. The other elements in the intervention, such as participating at the planned information meetings of the rounds with the surgeon, meeting the physiotherapist and the discharge meeting were not so important to the spouses. They enjoyed listening to the information because, as one spouse said:
It’s really quite exciting to hear and now we are two people who have heard the information if there are any doubts when we get home (Spouse 5)
The spouses described the meetings as nice and a pleasure to attend but were not able to say specifically what they liked about attending.
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DISCUSSION To investigate our study aim, interviews were conducted with spouses from the intervention group in our case management intervention (The SICAM-trial). When participating in the case management intervention the spouses found the collaboration with the case manager and the sense of security she provided through her availability and personality as the most meaningful part. Our findings were similar to an early American survey where Malone Beach and colleagues (MaloneBeach et al., 1992) found caregivers’ perceptions of case management to be an important aspect of the satisfaction of having a special relationship with a person who provided emotional care and navigated the caregivers through the system. A Swedish phenomenological study (Hjelm et al., 2015) found similar results when they explored the understanding of importance of case managers to family members of older persons. The sub-theme “Helps me feel secure – Experiencing a trusting relationship” deepened their understanding of relatives’ perception of case managers as providing comfort and having good intentions in giving support (Hjelm et al., 2015). Feeling secure and having someone to turn to are considered important features of case management. A qualitative study of Sandberg and colleagues (Sandberg et al., 2014) described how patients in a case management study experienced the case manager as a safety net. The spouses in our study were pleased with the availability of the case manager and they described how the most useful element of the case management intervention was the sense of security that there was always the possibility of contacting the case manager over the telephone. However, not all spouses felt the need to contact the case manager over the telephone owing to a lack of acute problems. Hjelm and colleagues (2015) also described that even though the family members did not feel a need to contact the case manager; they felt secure knowing that they could always reach her by telephone. The spouses in our study
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explained that it was the mere possibility of knowing they had a direct line to someone at the hospital that knew them and could answer their queries if any. The other elements of our case management intervention, in relation to the spouses’ participation in the planned information meetings with the patient and the healthcare professionals, were not mentioned as a particular need for the spouses. The spouses were satisfied with the intervention offers but not all chose to participate in all the planned information meetings, even though they were invited and encouraged to participate. This was an uncommon finding, since most studies conclude how the relatives often feel uninformed (Almborg et al., 2009), uninvolved in patient care (Ericsson and Lauri, 2000) and uninvolved in decision-making (Ho, 2008). The reasons for not participating in all the intervention offers could be that the spouses sometimes felt burdened due to their active involvement, which resulted in loss of sleep and feeling stressed. They worried about their loved ones’ health and well-being and tried to be available for their spouse at all times of the day. Similar results with regard to relatives’ protecting behaviour in relation to older patients in orthopaedic fasttrack programmes were found by the first author and colleagues (Authors, 2014) in a grounded theory study, where the relatives preserved the patients’ values and integrity through loving care, while worrying about how to manage the practical issues that occurred. Even though the findings of our study showed that spouses were feeling burdened with additional practical issues at home and at the hospital it was not directly related to the intervention. However it is still considered as an important aspect and consequence of older spouses’ active participation in family members’ hospitalisation. Another reason for the spouses’ lack of participation in all aspects of the intervention could be a lack of information about the procedural elements specific to the intervention. Case management interventions are often complex, comprising several elements, and during the interviews the spouses occasionally had difficulties describing what the case manager had done that distinguished
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her actions from usual care. No studies were found describing spouses’, relatives’ or informal caregivers’ lack of participation. However, two studies were found regarding patients’ barriers for their relatives’ participation in family care intervention studies: patients tended to try to protect their relatives from worries derived from participation (Spoth et al., 1996; Ammari et al., 2015). Whether the spouses participated in all the intervention elements or just some of them, they stated that their involvement was a natural thing and that it was a given that you supported your family through trying times. However, it was difficult to grasp whether this help was provided (or increased) because of the intervention and the case manager’s presence, or whether they would have been involved anyway. Other studies conclude how informal caregivers, such as family and relatives, often have a great desire to be involved in patients’ care and treatment (Dreyer et al., 2009; Weman and Fagerberg, 2006) and studies show that informal caregivers play an important role in the care of their elderly family members by providing practical and emotional support before, during and after hospitalisation (Authors, 2014; Hertzberg et al., 2003). In a former grounded theory study, loving was found as the key determinant for the relatives to be involved in the older patients’ fast-track programmes after total hip replacement and the thought of the patient going through invasive surgery alone was inconceivable (Authors, 2014). Even though the spouses may have different intentions for participating in the intervention they were positive about being involved, having a special contact person in the shape of a case manager and being able to attend all the meetings they desired. In this study we used a descriptive design with directed content analysis based on participants who were initially included in a prior study (The SICAM-trial). The study could therefore have been limited by too few participants in order to reach data saturation.
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The strength of the study was however that the participants had great knowledge about the study subject so the study aim could be elaborated.
CONCLUSION The study showed that the spouses experienced the personal face-to-face contact and constant availability of the case manager as the most meaningful part of their participation. The telephone contact with the case manager was experienced by the spouses as the most useful element of the case management intervention. The overall sense of security was found to be the availability of the case manager for information and support both during hospitalisation and the possibility of contacting her by telephone whenever they needed advice or information. Other elements of the intervention such as participating at information meeting were not found relevant by the spouses – however a nice opportunity for involvement. The knowledge derived from this study can be useful for healthcare professionals in clinical practice when involving spouses and other informal caregivers in older patients’ fast-track programs to keep in mind the necessity of being available for questions and support both during admission and after discharge. The case manager in our study was employed to perform the intervention. However future research is needed through implementation studies to explore how the case managers’ role and functions related to the case management elements can be transitioned to the patients’ contact nurse as a part of her daily task.
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ACKNOWLEDGEMENTS We would like to thank the participating spouses for contributing with their knowledge and experience.
CONFLICT OF INTERESTS No conflict of interest has been declared by the authors
ETHICAL APPROVAL The Danish Data Protection Agency approved the (J.nr. 2013-41-2202) and the National Committee on Health Research Ethics was presented with the study and found formal evaluation to be unnecessary.
FUNDING SOURCE The study is a part of first authors post doctoral research project: The SICAM-trial: Spouses’ Involvement through Case Management. Improving older patients’ post-discharge functional status after total hip replacement in fast-track programmes. The project has been funded by The NOVO Nordic Foundation with a post doctoral fellowship grant (http://www.novonordiskfonden.dk/en/grantrecipients?field_date_value%5Bvalue%5D%5By ear%5D=2012&field_date_value_1%5Bvalue%5D%5Byear%5D=2013&field_related_cente r_tid=90&keys=&=Search) and by the Health Scientific Research Foundation of Region Sealand, Denmark through three research grants.
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TABLES Table 1: Characteristics of participating spouses Spouse
Age
Sex
Married for (years)
Educational level
1
69
Male
45
Practical training
2
64
Male
19
Practical training
3
77
Female
56
High school
4
69
Male
48
University
5
69
Male
43
University
6
70
Female
5.5
Practical training
7
78
Male
56
College
8
75
Male
54
Primary school
9
71
Female
47
College
10
70
Male
44
High school
Table 2: The predetermined codes and questions at the interviews Predetermined codes
Open-ended question
Targeted questions
3
Most meaningful part of participating
4 5 6
Problematic issues Changes to be made The spouses’ role as an active participant Specific intervention elements that were found to be useful
What was your overall experience with participating in the intervention? How did you experience being involved by the case manager? What has been the most meaningful part of the experience? What was considered as problematic? What could have been done differently? How do you feel about being an active caregiver? And which part of the case management intervention did you find most useful?
-
2
Spouses’ overall experience of participating in the intervention Involvement by case manager
1
7
The day of inclusion The morning of surgery The period of admission The discharge meeting The telephone contact The contact after suture removal The rounds The meeting with the physiotherapist.
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