ORIGINAL ARTICLE
Perceived caring needs in patient–partner dyads affected by heart failure: A qualitative study Maria Liljeroos, Susanna Agren, Tiny Jaarsma and Anna Str€ omberg
Aims and objectives. To explore the perceived caring needs in patient–partner dyads affected by heart failure to develop an understanding of potential areas of support. Background. Being affected by heart failure has a great impact on both the patient and the partner but until now contemporary care has remained patient focused. Design. A qualitative study design was used. Methods. Eight focus group interviews were performed, which included nineteen patients diagnosed with heart failure and their cohabiting partner. Patients were aged between 55–89 years and partners’ ages ranged from 48–87 years. Data were analysed using qualitative content analyses. Results. The dyads perceived that caring needs could be summarised in two themes ‘Dyads perceive a need for continuous guidance through the different phases of the illness trajectory’ and ‘Dyads perceive a need to share burden and support with each other and others’. The dyads described a need to learn more about heart failure to be able to manage everyday life. Regular outpatient clinic visits and access to telephone support were vital, and having someone who cared about the well-being of the partners was perceived as comforting. Both the patient and the partner need to be present at the clinic visits. Receiving the same information and being able to ask questions reduce insecurity. Meeting others in the same situation and sharing the burden in group sessions were proposed as an opportunity to support each other and others. Conclusions. There is a need to improve education and support for patient–partner dyads affected by heart failure. Relevance to clinical practice. The result shows the importance to provide continuous healthcare contacts throughout the illness trajectory. Furthermore, partners should be included at follow-up, and support groups should be organised so that dyads can meet and support each other.
What does this paper contribute to the wider global clinical community?
• Patients with heart failure and
•
•
their partners want more support from and interaction with the healthcare providers. Continuous guidance and easy access to healthcare providers are needed during the whole illness trajectory, not just for a limited time after diagnosis or hospitalisation. Education and support in patient–partner groups were highlighted as a way to help dyads handle their life situation. When both the patient and the partner receive information and support, burden can be shared and the dyads can both support each other and others dyads.
Key words: heart failure, family, partner, focus groups, qualitative study, psychosocial nursing Accepted for publication: 10 February 2014
Authors: Maria Liljeroos, RN, PhD student, Department of Medicine and Health Sciences, Link€ oping University, Link€ oping; and Centre for Clinical Research, S€ ormland County Council, Eskilstuna; Susanna Agren, RN, PhD, Adjunct Lecturer, Department of Medicine and Health Sciences, Link€ oping University and Depart€ ment of Cardiothoracic Surgery, County Council of Osterg€ otland, Link€ oping; Tiny Jaarsma, RN, PhD, Professor, Department of
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Social and Welfare Studies, Link€ oping University, Link€ oping; Anna Str€ omberg, RN, PhD, Professor, Department of Medicine and Health Sciences, Link€ oping University and Department of Cardiol€ ogy, County Council of Osterg€ otland, Link€ oping, Sweden Correspondence: Maria Liljeroos, PhD Student, Department of Medicine, M€ alarsjukhuset, Eskilstuna, Sweden. Telephone: +46 16 104873 E-mail: [email protected]
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2928–2938, doi: 10.1111/jocn.12588
Original article
Introduction Patients with heart failure constitute a large group within the healthcare system, and the care for patients with heart failure mostly takes place at home and with support from partners and families. Partners often have a caring role, and it is known that partners provide support for longer periods of time than, for example, children (Daugherty et al. 2002, Lamura et al. 2008). Patients and partners want more support from the healthcare system to learn how to handle their situation, but until now, contemporary care has remained patient focused (Molloy et al. 2005, Dinesen et al. 2008). Therefore, it is important to find ways to improve care for patients and partners. There is a growing interest in designing interventions targeting both the patient and the partner. Different designs have been tested, but the dyads own perception on what education and support they consider to be important has not been fully explored. That inspired us to interview Swedish patients and their cohabiting partners affected by heart failure to gain a better understanding of their perceived caring needs.
Background Heart failure is characterised by substantial symptom burden, such as shortness of breath, tiredness, dizziness, swelling of ankles and abdomen, and a poor quality of life even when patients are not experiencing an exacerbation (Berry & McMurray 1999, Bekelman et al. 2007). The goals of treatment are to relieve symptoms, prevent hospital admission and improve survival (McMurray et al. 2012). Because only limited curative treatment regimens are available, patients with heart failure often endure a disease trajectory characterised by deteriorating functional status and repeated hospitalisations (Campbell et al. 1998, Berry & McMurray 1999). Therefore, heart failure involves adaptation within several physical, psychological and social aspects (Bishop 2005). Patients perceive difficulty coping with functional limitation but also reported problems due to side effects of medications, comorbidities and a lack of psychosocial support and rehabilitation services. Living with heart failure can be frightening, restrictive and distressing for both patients and their caregiving partners (Pattenden et al. 2007). A caregiver is normally defined as unpaid relatives or friend (Caregiving NAf 2009). If a patient with a chronic disease has a partner living in the same household in a marriage-like relationship, it is most often that this partner provides most of the caregiving (Aldred et al. 2005). Dyadic © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2928–2938
Caring needs in heart failure dyads
relations can be viewed as a system where changes in one part of the system influence other parts of the system (McCubbin 1989). When a dyad is affected by a chronic disease, their social identity, roles, intimacy and plans for the future are affected (Cook 2001, Kenny et al. 2006). A definition of the concept dyad is two individuals (as husband and wife) maintaining a sociologically significant relationship (Cook 2001). The caregiving role has been associated with several difficulties, such as fear for the future, impairment of the relationship, social disruption and financial impact (Rees et al. 2001, Ohman & Soderberg 2004). Many partners assume caregiving responsibilities without being aware of the burden interrelated with this role, including physical exhaustion, mental stress and personal health risk (Rabow et al. 2004). Caregiving partners report that the most burdensome aspects of care are enforcing dietary restriction and adherence and monitoring for symptoms of heart failure (Pressler et al. 2009). Interventions involving partners have been found to have positive effects on the health outcomes for both the patient and the partner, but more research is needed to understand how intervention programmes should be designed (Chesla 2010, Hartmann et al. 2010). Some previous research has included patient–partner dyads, and others have also included other family members. A meta-analysis reviewing studies targeting both patient– partner dyads and patients and other family members concluded among patients, interventions had positive effects on depression and, in some cases, on mortality. Among partners and family members, positive effects were found for caregiving burden, depression and anxiety when interventions focused on relationships. These interventions resulted in less depression and burden in the closest family, but the same effect was not achieved when relationship issues between patient and family members were not addressed (Martire et al. 2004). However, partners’ ability to support patients with heart failure varies. Increased attention to the spouses’ caregiving situation promotes better caregiver outcome, as well as better patient outcomes (Martensson et al. 2001). Lofvenmark et al. (2013) found that a family oriented multiprofessional, educational programme showed no significant differences in anxiety, depression or quality of life between the intervention group and the control group. A total number of 128 family members were included, both partners and other family members such as children, close friend or siblings. The intervention group met for six times for two-hour sessions during a period of six months. The authors concluded that improved disease-related knowledge
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The study had a qualitative design using focus group interviews with patients suffering from heart failure and their cohabiting partner. Data were analysed using qualitative content analysis.
lished elsewhere (Agren et al. 2012), and they were recruited from both the control group (n = 8) and intervention group (n = 11). The inclusion criteria in the intervention study were being a dyad consisting of a patient diagnosed with heart failure according to the criteria by the European Society of Cardiology (McMurray et al. 2012), in NYHA classes II–IV, cohabiting with a partner in a marriage-like relationship and being able to communicate in Swedish. In the current study, dyads who had participated the last two years in the intervention study were invited by a letter that described the purpose of the study and the time and place for the interview. They replied and advised if they wished to participate or not. Of the 49 dyads available, 19 agreed to participate. Reasons given for not participating were as follows: feeling too ill and/or fatigued, a sick spouse or disinterest. Seven female and twelve male patients participated, aged between 55–89 years (mean age 72 years). Partners’ age ranged between 48–87 years (mean age 70 years), see Table 1.
Participants and sampling
Interviews and procedures
The participating dyads were recruited at one university hospital and one county hospital in the south-east of Sweden between March–June 2011. The dyads had previously participated in an intervention study that has been pub-
Eight focus group interviews were performed, and two or three dyads participated in each interview. The interviews took place in an undisturbed room outside the heart failure clinics and lasted between 50–90 minutes. The
might need to be combined with other target variables to induce desired effects on depression, anxiety and quality of life in family members. A 12-week dyad intervention with education and psychosocial support increased patients’ perceived control after three months, but not after 12 months, and no effect was found in the partner group (Agren et al. 2012), which suggests that more frequent professional contacts and ongoing support may be necessary to achieve a higher impact on dyad outcomes. Therefore, the objective of this study was to explore the perceived caring needs in patient–partner dyads affected by heart failure to develop an understanding of potential areas to support.
Methods
Table 1 Description of participating dyads per each focus group
Focus group 1 Focus group 2 Focus group 3 Focus group 4
Focus group 5 Focus group 6
Focus group 7
Focus group 8
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Patient ID
Sex
Age
Diagnosed year
Partner ID
Sex
Age
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19
Male Male Male Male Male Female Male Female Female Female Male Female Female Male Female Male Male Male Male
81 76 65 71 78 74 77 63 79 84 64 69 78 56 55 89 70 69 69
2000 2009 2007 2008 2004 1998 2008 2008 1990 2008 2008 1997 1990 2007 2005 2000 2006 1992 2007
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19
Female Female Female Female Female Male Female Male Male Male Female Male Male Female Male Female Female Female Female
79 73 56 68 76 80 73 62 81 81 59 73 76 48 59 87 69 69 59
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2928–2938
Original article
interviews were conducted by a moderator (first author) who was responsible for directing the discussion and facilitating the conversation flow. The second author also attended the interviews as an observer and was responsible for taking notes and tape recording the interview sessions. The moderator and the observer were both nurses experienced in qualitative research methods. They had no care relation to the participants and had never met them before the interview, nor did the participants know each other. The moderator began by welcoming all the participants thanking them for coming; then, the moderator and the observer introduced themselves. The moderator described the purpose of the study and the interview procedure. The moderator encouraged a conversational discussion tone, to enable the interviewees to talk more freely and interact with each other. An interview guide with eight questions was used, Table 2. The first interview was performed as a pilot to test the interview guide. As the guide worked well, no changes were made to the questions, and the interview guide as piloted was included in the analysis. As an opening question, the participants were asked to introduce themselves and talk a little about their situation. Follow-up questions were asked for clarification and to continue the conversation. At the end of each interview, the observer verbally summed up results so that participants could confirm that everything had been correctly understood and to offer the opportunity to clarify any ambiguities (Krueger & Casey 2009). After the interviews, the moderator and the observer together summarised the interview and made notes on the atmospheres in the group during the interview. The interviews were tape-recorded and transcribed verbatim by a secretary. The first author reviewed the transcriptions for accuracy by comparing them to the audio recordings. Notes from the session were used to supplement the transcription with
Table 2 Interview guide The interview guide was made up the following questions How has your life changed as a result of the heart failure? Do you experience any difficulties managing the heart failure, and if so, what are the difficulties? What is required for you to feel that you have more control of the heart failure? What information/support would you like to have? When should the education/support be given? Does the need for information and support change over time? Do you prefer receiving education/support together with your partner, or should it be given individually?
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2928–2938
Caring needs in heart failure dyads
descriptions of the tone of the speaker’s voice, body language and interactions.
Analysis While eight focus group interviews were performed, no new information was derived after six interviews signifying saturation. Therefore, the sample size of 19 dyads was judged to be large enough to give a variety of experiences, and also to allow sufficient depth in the analysis, which was also confirmed during the analysis. Qualitative content analysis as described by Graneheim and Lundman (2004) was used for the analysis. The analysis was performed in several steps. In the first step, the text was read several times to get a grasp of the data as a whole. The text was then divided into domains, which is the rough structure the text can be divided into with a low degree of interpretation, based on the questions in the interview guide. The text in each domain was condensed into meaning units, each comprising of several words, sentences or paragraphs containing aspects related to each other through their content and context. Each meaning unit was labelled with a code at a low level of abstraction. These procedures were performed as a dialogue between the researchers in an attempt to ameliorate the influence of the researchers’ preunderstanding on the analysis. The codes were interpreted and compared for differences and similarities and sorted into subcategories. Next, the subcategories were examined for underlying meanings. Threads of meaning recurring in different subcategories were formulated into categories. The categories were abstracted and formulated as themes, which formed the basis for the presentation of the findings. These are illustrated with quotations and extracts of conversations from the interviews to increase the transparency of the interpretation. To ensure trustworthiness, each step of the analysis process was discussed until consensus about the interpretation was achieved.
Ethical approval The principles outlined in the Declaration of Helsinki have been followed throughout the study. The study has been approved by the Regional Ethical Review Board in Link€ oping (Dnr 03-568, Dnr M178-04). All dyads received verbal and written information about the study. For the dyads that chose to participate, both patient and partner gave written informed consent before entering the study.
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Findings Two themes and four categories with underlying subcategories describe the perceived caring needs of the dyads, see Table 3. The themes were labelled ‘Dyads perceive a need for continuous guidance through the different phases of the illness trajectory’ with the categories: Continuous guidance through knowledge acquisition and Continuous guidance through supportive health care contact, and ‘Dyads perceive a need to share burden and support with each other and others’ with the categories: Joint dyad education and support reduce insecurity, and education and support can be given and shared in patient–partner groups.
Dyads perceive a need for continuous guidance through the different phases of the illness trajectory In this first theme, the dyads describe a need to learn about heart failure in order to manage everyday life. They felt that it was difficult to sort information found on, for example, the Internet, and they often perceived the information to be frightening. Regular clinic visits and access to a phone number to someone who knows the dyads are vital. Having someone who cared also for the partner’s well-being was perceived as comforting.
difficulties. The dyads experienced that they initially had little knowledge about the disease, and it was difficult to formulate questions. It was also difficult to search for knowledge, information found on, for example, the Internet was perceived by many as frightening and led to insecurity in daily life. Patient 9: You don’t ask them (the questions), you google, read things on the Internet and I think that’s sometimes not so good. You become more frightened perhaps, than if you speak to someone. It’s always better to speak to someone than just reading a piece of paper, definitely.
The need for knowledge was great during the time just after diagnosis, but continuous information was also viewed as important because new questions frequently arouse in everyday life. Many thoughts concerned the future and what would happen in case the heart failure deteriorated, but also practical things such as how much one can exercise and what one can eat and drink. Receiving information regularly and having someone to address the questions to were important for dyads in order to feel that they were in control of the heart failure. Partner 5: I feel that more information is needed all the time. Patient 6: New questions arise depending on, I mean, if I get worse there’ll probably be more questions, so you do need continuous information.
Continuous guidance through knowledge acquisition The dyads described being affected by heart failure often lead to a major transition in life, and both patients and partners had many questions and had experienced many
Patient 5: If I was to get worse, would you not think that it would be good to have more information about what’s happened and what to do next? Partner 6: The more information the better.
Table 3 Examples of subcategories, categories and themes Subcategories
Categories
Themes
Wish for knowledge about heart failure New concerns frequently arise in everyday life Difficult to seek and understand information Being able to phone the nurse for advice and support Regular visits at someone who knows the dyads and the dyads have confidence in Someone who also care for the partners well-being When both get the same information, it provides security in everyday life An opportunity for both to ask questions and get answers Need for joint psychosocial support to handle the life situation Dyads learn from each other An opportunity to share concerns with others in the same situation
Continuous guidance through knowledge acquisition
Dyads perceive a need for continuous guidance through the different phases of the illness trajectory
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Continuous guidance through supportive healthcare contact
Joint dyad education and support reduce insecurity
Dyads perceive a need to share burden and support with each other and other dyads
Education and support can be given and shared in patient–partner groups
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2928–2938
Original article
Continuous guidance through supportive healthcare contact The dyads wished for regular visits to someone who knew them, and they had confidence in. When the visits at the heart failure clinic ended, they had no one to contact. Visits to the primary care physician were perceived as just checkups, and there was no time for asking questions. Several patients reported that they met with different physicians at each visit in primary care, and they felt that some were not as knowledgeable regarding heart failure. Many patients found this distressing and have preferred to continue visiting the heart failure clinic. Partner 7: But I suppose you just have to remain at the heart failure clinic and come back for more visits. It doesn’t have to be with a physician, it could be with a nurse. I mean, they’re very good these heart nurses. They’re experienced, which we have all noticed with (nurse), she was wonderful to speak to and she answers most questions.
Partners described that the nurse at the heart failure clinic was the only one who also took an interest in their well-being. Once a relationship was established, it was easy for partners to confide in the nurse and share their worries. Partner 11: //, not only the person who is sick, but also the partner, because no one asks how you feel as a partner. There are a million thoughts. . .
Another partner said; Partner 1: No one asks how I feel in all of this. . .
All dyads emphasised that they wished to have a healthcare contact, for example the nurse at the heart failure clinic. An opportunity for dyads to seek advice and support during daily telephone hours would increase security. Partner 11: I think that sounds good too, that you also have someone to phone. We don’t have that, a contact person. Patient 11: The preferred option would be to have a phone number to this ward (heart failure clinic). You would be able to phone if you feel something, if you feel a twinge in your chest, and ask what it might be and things like that. You would bypass the health centre altogether.
Caring needs in heart failure dyads
the same information and ask questions, which reduced insecurity. Meeting others in the same situation and sharing the burden in group sessions means an opportunity to support each other and others.
Joint dyad education and support reduce insecurity The dyads all agreed that there was a common need for both the patient and the partner to participate during hospital appointments because the disease affected them both. However, few partners had been invited to the heart failure clinic. Patients felt that it was difficult to remember all the information and then be able to retell it to their partner. Partners also had questions of their own, and without knowledge on heart failure, their ability to support and assist the patient was reduced. Partner 10: I felt it was quite natural that both went because it happened to both of us. As the disease itself was under control, the main worry was treatment and returning to as normal a life as possible. Both individuals need to cooperate if that’s going to work, so I thought that was good.
Living with heart failure means a constant concern for the present and the future. Life can take a step turn, just as a roller coaster and you never know what the next day will bring. Both patients and partners felt that this stress led to changes in mood and short temper that in turn led to more conflicts between them, and these conflicts were something they have not experienced before. Not being able to talk to each other as before created uncertainty. Patients also described a sorrow for their bodily losses. To no longer cope with everyday activities imposed feelings of worthlessness and frailty. Their health made it difficult to participate in social activities as before. Partners, on the other hand, were living with a constant concern for the patient’s health and were anxious when leaving their loved one home alone, which led to social constraints. The partners also experienced an increased burden as they felt compelled to take on more work at home to relieve their loved one. Partner 19: I feel it’s this constant worry, I’m still working and he (patient) is on his own at home some days and he comes up with a lot of things that he’s to do. I find it really hard. It’s the worrying I
Dyads perceive a need to share burden and support with each other and other dyads This second theme describes the need for both the patient and the partner to be present at the clinic visits if the dyad is to share the care. Living with heart failure is perceived as a roller coaster, and dyads never know what issues may arise. Joint visits gave an opportunity for both to receive © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2928–2938
find. . . and I suppose I take on a bit extra, to provide some relief. . .
The dyads described a need to talk to each other about their feelings, but found it difficult to find the courage to do it on their own. They suggested that during joint dyad visits, the nurse could introduce and participate in these difficult conversations, which would make it easier to talk to each other about their concerns.
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Education and support can be given and shared in patient–partner groups Several of the dyads requested regular nurse led meetings in groups with other dyads in the same situation. To meet and talk would make the loneliness less heavy to carry. Partner 18: ‘I know exactly what kind of support I would want and that’s to meet regularly in group sessions with people in the same situation.’
Some participants, especially the partners, also suggested that the group could occasionally be divided into separate patient and partner groups. Some issues could be difficult to discuss with both patients and partners attending, but if the groups were divided, an opportunity would be provided to address issues that each group perceived as particularly difficult. Partner 5: Well, that’s what I thought, that you could separate them (the groups) sometimes, because then you might say other things. You want to be protective, but you still think ‘what will I do when he’s like this?’ You don’t want to say that to his face, but you might get some tips, that’s what I mean. Perhaps that could work.
Partners described feelings of hopelessness that were difficult to address with their loved ones and a disappointment that life had not turned out the way they had hoped. They watched over their loved ones day and night, which made them feel tired, isolated and dejected. They also carried a sense of guilt when they sometimes put their own interests first and attended social activities alone. Life constantly revolved around the patient and his/her needs, and partners expressed a need for personal time. Sharing burdens and experiences with others in the same situation was perceived as a relief. The partners could support each other and discuss how to handle difficult situations and also be supported to make demands on the patient to help with simple chores. Some patients found it difficult to ask certain questions when the partner attended. In particular, questions about the future and the prognosis were difficult to address as they wished to protect their partners from certain information. When the nurse participated, it was possible to receive answers to questions, while at the same time receiving support from others who shared the same thoughts and experiences. However, some dyads did not agree with the need for separate patient–partner groups. The patients felt that personal matters should not be discussed with others without both parties participating. Patient 5: But we really don’t have secrets, do we?
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Partner 5: No, it’s a not secret, that’s not what I meant. Patient 5: Surely, we can be straight with each other. Partner 5: Yes, I suppose so.
Discussion This study sheds new light on the psychosocial support needed by dyads affected by heart failure. The two themes summarising the findings were as follows: Dyads perceive a need for continuous guidance through the different phases of the illness trajectory; and Dyads perceive a need to share burden and support with each other and others dyads. In the current study, the dyads emphasised a need for continuous guidance by a supportive healthcare contact in which the dyads felt confidence in, and an ongoing need for knowledge even after several years. A previous review also concluded that patients with heart failure associated good care with continuity and that the same care provider should care for both the patient’s and the family members’ wellbeing (Jeon et al. 2010). Most of the patients had previously gone for follow-up visits at outpatient heart failure clinics, but had now been referred to primary care. In primary care, the time between the visits varied and few partners had been invited to accompany the patients. Our findings contrast with a recent study that concluded stable patients on optimal medical therapy do not benefit from long-term follow-up at heart failure clinics regarding death, readmissions and quality of life (Schou et al. 2013). In the current study, the dyads experienced the transfer to primary care as insecure and described that the new caregiver did not understand their need for support and were hard to reach, which led to insecurity in everyday life. Partners sometimes found it distressing and burdensome to care for their loved one, and the care providers at the heart failure clinic were the only ones who also cared about their situation. Another study examined caregivers of patients seriously ill with cancer, heart failure and COPD, and found that they desired more help from the health care and family, and an anxious coping style was significantly associated with caregiver psychosocial-spiritual well-being. This may suggest that caregiver burden is rather a universal experience that can be buffered by social resources and successful coping styles (Burton et al. 2012). Thus, a phone number to the heart failure clinic both patient and partner can use could be a sufficient complement to primary care in order for the dyads to feel less anxious and more cared for if and when new questions arise, or in case of deterioration. The dyads agreed that it is important for both patient and partner to receive information, but it is known that © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2928–2938
Original article
healthcare professionals mainly invite only the patient to the outpatient clinic visits (Molloy et al. 2005). Because partners play a key role in supporting the patient at home both the patient and the partner need the same information and have an opportunity to ask questions. Lowson et al. (2013) describe family carers as ‘conductors’ to older adults, making strong contributions to maintaining good care at home throughout the illness trajectory. Then, when the care recipient becomes hospitalised or needs to seek care, family carers find themselves playing the ‘second fiddle’, and the possibility to influence decisions and take an active part in the care is greatly diminished. In the light of these findings, it is clear that healthcare professionals need a different approach, where they recognise partners and family members as important actors in the care of the patient. Including partners in the care facilitates patient’ and partners sharing the care in everyday life. The substantial symptom burden that characterises heart failure and the restrictions related to the disease can lead to symptoms of depression, and patients’ mood swings often transfers to partners and family members (Jaarsma et al. 1999, Martire et al. 2004). Both the patients and the partners described changes in moods and short temper, which in turn led to arguments and internal conflicts that were difficult to talk about. Contrary to these findings, previous research has found that shared experiences of heart failure bring spouses closer together and strengthens their relationship (Mahoney 2001, Bosworth et al. 2004). Retrum et al. (2013) in turn observed the importance of care provider sensitivity to dynamics occurring between the dyad ‘behind the scene’. Incongruence in communication was associated with conflicts and distress within dyads, which could lead to poor-quality heart failure care. Family members, usually the spouse, are frequently involved in the self-care, but they sometimes express this support in ways perceived negatively by patients. Partners need help to communicate support in ways patients will perceive as positive rather than nagging and criticising (Hartmann et al. 2010, Rosland et al. 2010). The result implies that if dyads are to be able to share care, there is a need for relationship-focused family interventions helping dyads to communicate and express their feelings to each other. When care providers have established a relationship with the dyad, there can be fruitful conversations helping dyads support each other. Several of the dyads emphasised the need for sharing concerns and experiences with other dyads in the same situation. Group sessions with education and support are frequently used in the rehabilitation after a myocardial infarction, but not in patients with heart failure and their partners (Clark et al. 2005). Support groups can provide a © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2928–2938
Caring needs in heart failure dyads
sense of validation, relief and comfort, as well as overcome social isolation through meaningful social activity (Chang et al. 2004, Jeon et al. 2010). Exchanging experiences with dyads in the same situation in groups where care providers also take part provides an opportunity to learn both from other dyads and from professionals. Some partners also asked for separate patient groups and partner groups. Some issues can be difficult to discuss when both the patient and their partner attend but if the groups are divided, there is an opportunity to address issues that are perceived as being particularly difficult in each group. The participating patients were reluctant to the proposal to be divided into two groups where they were not with their partner and found it a little strange that partners would talk about them without them being present. However, the result has demonstrated that patient–partner dyads prefer a more active role regarding healthcare situations. Further investigations will determine whether groups should be divided or not.
Methodological considerations Recruiting participants from both the control group and the intervention group from a previous intervention study enriched the result as they had different experiences of support and education. Choosing focus groups instead of individual or dyad interviews may have enriched the results when the narratives are perceived as rich. The interaction between the participants highlighted different aspects, and the questions asked were open-ended. However, being interviewed in a group may be a barrier for some of the invited dyads, who therefore chose not to participate. At the end of the interview, participants had the opportunity to discuss topics they considered important that were not addressed during the interview. The observer’s summary at the end gave the dyads an opportunity to reflect on what had been said and correct any misinterpretations. During the interviews, the atmosphere was openhearted and the participants mostly focused on the issues.
Conclusion In summary, the result indicates there is a need to improve education and support for patient–partner dyads affected by heart failure. To date, healthcare professionals do not fully recognise the dyads caring need. The result of this study may be used to improve quality and content in the standard care and as a guide when designing new dyad intervention studies.
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Clinical Research S€ ormland, Sweden and Link€ oping University and Swedish Research Council, Sweden.
Relevance to clinical practice Clinical implications of the study are to aim at providing continuity in the healthcare contacts throughout the illness trajectory. An opportunity for dyads to seek advice and support during daily telephone hours would increase security. Furthermore, including partners in follow-up and organising support groups where dyads can meet and share their burden and where nurses could provide support may be one way to ease everyday life for the dyads.
Disclosure The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/ethical_ 1author.html), as follows: (1) substantial contributions to conception and design of, or acquisition of data or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content, and (3) final approval of the version to be published.
Acknowledgements We would like to thank the participants in the study. The study was financially supported by grants from Centre for
Conflict of interest The authors have no conflict of interest.
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Original article Jeon YH, Kraus SG, Jowsey T & Glasgow NJ (2010) The experience of living with chronic heart failure: a narrative review of qualitative studies. BMC Health Services Research 10, 77. Kenny DA, Kashy DA & Cook WL (2006) Dyadic Data Analysis. Guilford Press, New York. Krueger RA & Casey MA (2009) Focus Groups: A Practical Guide for Applied Research. Sage Publications, Thousand Oaks, CA. Lamura G, Mnich E, Nolan M, Wojszel B, Krevers B, Mestheneos L & Dohner H (2008) Family carers’ experiences using support services in Europe: empirical evidence from the EUROFAMCARE study. Gerontologist 48, 752–771. Lofvenmark C, Saboonchi F, Edner M, Billing E & Mattiasson AC (2013) Evaluation of an educational programme for family members of patients living with heart failure: a randomised controlled trial. Journal of Clinical Nursing 22, 115–126. Lowson E, Hanratty B, Holmes L, Addington-Hall J, Grande G, Payne S & Seymour J (2013) From ‘conductor’ to ‘second fiddle’: older adult care recipients’ perspectives on transitions in family caring at hospital admission. International Journal of Nursing Studies 50, 1197–1205. Mahoney JS (2001) An ethnographic approach to understanding the illness experiences of patients with congestive heart failure and their family members. Heart and Lung 30, 429–436. Martensson J, Dracup K & Fridlund B (2001) Decisive situations influencing spouses’ support of patients with heart failure: a critical incident technique analysis. Heart and Lung 30, 341–350. Martire LM, Lustig AP, Schulz R, Miller GE & Helgeson VS (2004) Is it benefi-
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Caring needs in heart failure dyads cial to involve a family member? A meta-analysis of psychosocial interventions for chronic illness. Health Psychology 23, 599–611. McCubbin MA (1989) Family stress and family strengths: a comparison of single- and two-parent families with handicapped children. Research in Nursing & Health 12, 101–110. McMurray JJ, Adamopoulos S, Anker SD, Auricchio A, Bohm M, Dickstein K, Falk V, Filippatos G, Fonseca C, Gomez-Sanchez MA, Jaarsma T, Kober L, Lip GY, Maggioni AP, Parkhomenko A, Pieske BM, Popescu BA, Ronnevik PK, Rutten FH, Schwitter J, Seferovic P, Stepinska J, Trindade PT, Voors AA, Zannad F, Zeiher A, Bax JJ, Baumgartner H, Ceconi C, Dean V, Deaton C, Fagard R, Funck-Brentano C, Hasdai D, Hoes A, Kirchhof P, Knuuti J, Kolh P, McDonagh T, Moulin C, Reiner Z, Sechtem U, Sirnes PA, Tendera M, Torbicki A, Vahanian A, Windecker S, Bonet LA, Avraamides P, Ben Lamin HA, Brignole M, Coca A, Cowburn P, Dargie H, Elliott P, Flachskampf FA, Guida GF, Hardman S, Iung B, Merkely B, Mueller C, Nanas JN, Nielsen OW, Orn S, Parissis JT & Ponikowski P (2012) ESC guidelines for the diagnosis and treatment of acute and chronic heart failure 2012: the Task Force for the Diagnosis and Treatment of Acute and Chronic Heart Failure 2012 of the European Society of Cardiology. Developed in collaboration with the Heart Failure Association (HFA) of the ESC. European Journal of Heart Failure 14, 803–869. Molloy GJ, Johnston DW & Witham MD (2005) Family caregiving and congestive heart failure. Review and analysis. European Journal of Heart Failure 7, 592–603.
Ohman M & Soderberg S (2004) The experiences of close relatives living with a person with serious chronic illness. Qualitative Health Research 14, 396–410. Pattenden JF, Roberts H & Lewin RJ (2007) Living with heart failure; patient and carer perspectives. European Journal of Cardiovascular Nursing 6, 273–279. Pressler SJ, Gradus-Pizlo I, Chubinski SD, Smith G, Wheeler S, Wu J & Sloan R (2009) Family caregiver outcomes in heart failure. American Journal of Critical Care 18, 149–159. Rabow MW, Hauser JM & Adams J (2004) Supporting family caregivers at the end of life: “they don’t know what they don’t know”. JAMA 291, 483– 491. Rees J, O’Boyle C & MacDonagh R (2001) Quality of life: impact of chronic illness on the partner. Journal of the Royal Society of Medicine 94, 563–566. Retrum JH, Nowels CT & Bekelman DB (2013) Patient and caregiver congruence: the importance of dyads in heart failure care. Journal of Cardiovascular Nursing 28, 129–136. Rosland AM, Heisler M, Choi HJ, Silveira MJ & Piette JD (2010) Family influences on self-management among functionally independent adults with diabetes or heart failure: do family members hinder as much as they help? Chronic Illness 6, 22–33. Schou M, Gustafsson F, Videbaek L, Tuxen C, Keller N, Handberg J, Sejr Knudsen A, Espersen G, Markenvard J, Egstrup K, Ulriksen H & Hildebrandt PR (2013) Extended heart failure clinic follow-up in low-risk patients: a randomized clinical trial (NorthStar). European Heart Journal 34, 432–442.
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© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2928–2938
Perceived caring needs in patient–partner dyads affected by heart failure: A qualitative study Maria Liljeroos, Susanna Agren, Tiny Jaarsma and Anna Str€ omberg
Aims and objectives. To explore the perceived caring needs in patient–partner dyads affected by heart failure to develop an understanding of potential areas of support. Background. Being affected by heart failure has a great impact on both the patient and the partner but until now contemporary care has remained patient focused. Design. A qualitative study design was used. Methods. Eight focus group interviews were performed, which included nineteen patients diagnosed with heart failure and their cohabiting partner. Patients were aged between 55–89 years and partners’ ages ranged from 48–87 years. Data were analysed using qualitative content analyses. Results. The dyads perceived that caring needs could be summarised in two themes ‘Dyads perceive a need for continuous guidance through the different phases of the illness trajectory’ and ‘Dyads perceive a need to share burden and support with each other and others’. The dyads described a need to learn more about heart failure to be able to manage everyday life. Regular outpatient clinic visits and access to telephone support were vital, and having someone who cared about the well-being of the partners was perceived as comforting. Both the patient and the partner need to be present at the clinic visits. Receiving the same information and being able to ask questions reduce insecurity. Meeting others in the same situation and sharing the burden in group sessions were proposed as an opportunity to support each other and others. Conclusions. There is a need to improve education and support for patient–partner dyads affected by heart failure. Relevance to clinical practice. The result shows the importance to provide continuous healthcare contacts throughout the illness trajectory. Furthermore, partners should be included at follow-up, and support groups should be organised so that dyads can meet and support each other.
What does this paper contribute to the wider global clinical community?
• Patients with heart failure and
•
•
their partners want more support from and interaction with the healthcare providers. Continuous guidance and easy access to healthcare providers are needed during the whole illness trajectory, not just for a limited time after diagnosis or hospitalisation. Education and support in patient–partner groups were highlighted as a way to help dyads handle their life situation. When both the patient and the partner receive information and support, burden can be shared and the dyads can both support each other and others dyads.
Key words: heart failure, family, partner, focus groups, qualitative study, psychosocial nursing Accepted for publication: 10 February 2014
Authors: Maria Liljeroos, RN, PhD student, Department of Medicine and Health Sciences, Link€ oping University, Link€ oping; and Centre for Clinical Research, S€ ormland County Council, Eskilstuna; Susanna Agren, RN, PhD, Adjunct Lecturer, Department of Medicine and Health Sciences, Link€ oping University and Depart€ ment of Cardiothoracic Surgery, County Council of Osterg€ otland, Link€ oping; Tiny Jaarsma, RN, PhD, Professor, Department of
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Social and Welfare Studies, Link€ oping University, Link€ oping; Anna Str€ omberg, RN, PhD, Professor, Department of Medicine and Health Sciences, Link€ oping University and Department of Cardiol€ ogy, County Council of Osterg€ otland, Link€ oping, Sweden Correspondence: Maria Liljeroos, PhD Student, Department of Medicine, M€ alarsjukhuset, Eskilstuna, Sweden. Telephone: +46 16 104873 E-mail: [email protected]
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2928–2938, doi: 10.1111/jocn.12588
Original article
Introduction Patients with heart failure constitute a large group within the healthcare system, and the care for patients with heart failure mostly takes place at home and with support from partners and families. Partners often have a caring role, and it is known that partners provide support for longer periods of time than, for example, children (Daugherty et al. 2002, Lamura et al. 2008). Patients and partners want more support from the healthcare system to learn how to handle their situation, but until now, contemporary care has remained patient focused (Molloy et al. 2005, Dinesen et al. 2008). Therefore, it is important to find ways to improve care for patients and partners. There is a growing interest in designing interventions targeting both the patient and the partner. Different designs have been tested, but the dyads own perception on what education and support they consider to be important has not been fully explored. That inspired us to interview Swedish patients and their cohabiting partners affected by heart failure to gain a better understanding of their perceived caring needs.
Background Heart failure is characterised by substantial symptom burden, such as shortness of breath, tiredness, dizziness, swelling of ankles and abdomen, and a poor quality of life even when patients are not experiencing an exacerbation (Berry & McMurray 1999, Bekelman et al. 2007). The goals of treatment are to relieve symptoms, prevent hospital admission and improve survival (McMurray et al. 2012). Because only limited curative treatment regimens are available, patients with heart failure often endure a disease trajectory characterised by deteriorating functional status and repeated hospitalisations (Campbell et al. 1998, Berry & McMurray 1999). Therefore, heart failure involves adaptation within several physical, psychological and social aspects (Bishop 2005). Patients perceive difficulty coping with functional limitation but also reported problems due to side effects of medications, comorbidities and a lack of psychosocial support and rehabilitation services. Living with heart failure can be frightening, restrictive and distressing for both patients and their caregiving partners (Pattenden et al. 2007). A caregiver is normally defined as unpaid relatives or friend (Caregiving NAf 2009). If a patient with a chronic disease has a partner living in the same household in a marriage-like relationship, it is most often that this partner provides most of the caregiving (Aldred et al. 2005). Dyadic © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2928–2938
Caring needs in heart failure dyads
relations can be viewed as a system where changes in one part of the system influence other parts of the system (McCubbin 1989). When a dyad is affected by a chronic disease, their social identity, roles, intimacy and plans for the future are affected (Cook 2001, Kenny et al. 2006). A definition of the concept dyad is two individuals (as husband and wife) maintaining a sociologically significant relationship (Cook 2001). The caregiving role has been associated with several difficulties, such as fear for the future, impairment of the relationship, social disruption and financial impact (Rees et al. 2001, Ohman & Soderberg 2004). Many partners assume caregiving responsibilities without being aware of the burden interrelated with this role, including physical exhaustion, mental stress and personal health risk (Rabow et al. 2004). Caregiving partners report that the most burdensome aspects of care are enforcing dietary restriction and adherence and monitoring for symptoms of heart failure (Pressler et al. 2009). Interventions involving partners have been found to have positive effects on the health outcomes for both the patient and the partner, but more research is needed to understand how intervention programmes should be designed (Chesla 2010, Hartmann et al. 2010). Some previous research has included patient–partner dyads, and others have also included other family members. A meta-analysis reviewing studies targeting both patient– partner dyads and patients and other family members concluded among patients, interventions had positive effects on depression and, in some cases, on mortality. Among partners and family members, positive effects were found for caregiving burden, depression and anxiety when interventions focused on relationships. These interventions resulted in less depression and burden in the closest family, but the same effect was not achieved when relationship issues between patient and family members were not addressed (Martire et al. 2004). However, partners’ ability to support patients with heart failure varies. Increased attention to the spouses’ caregiving situation promotes better caregiver outcome, as well as better patient outcomes (Martensson et al. 2001). Lofvenmark et al. (2013) found that a family oriented multiprofessional, educational programme showed no significant differences in anxiety, depression or quality of life between the intervention group and the control group. A total number of 128 family members were included, both partners and other family members such as children, close friend or siblings. The intervention group met for six times for two-hour sessions during a period of six months. The authors concluded that improved disease-related knowledge
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The study had a qualitative design using focus group interviews with patients suffering from heart failure and their cohabiting partner. Data were analysed using qualitative content analysis.
lished elsewhere (Agren et al. 2012), and they were recruited from both the control group (n = 8) and intervention group (n = 11). The inclusion criteria in the intervention study were being a dyad consisting of a patient diagnosed with heart failure according to the criteria by the European Society of Cardiology (McMurray et al. 2012), in NYHA classes II–IV, cohabiting with a partner in a marriage-like relationship and being able to communicate in Swedish. In the current study, dyads who had participated the last two years in the intervention study were invited by a letter that described the purpose of the study and the time and place for the interview. They replied and advised if they wished to participate or not. Of the 49 dyads available, 19 agreed to participate. Reasons given for not participating were as follows: feeling too ill and/or fatigued, a sick spouse or disinterest. Seven female and twelve male patients participated, aged between 55–89 years (mean age 72 years). Partners’ age ranged between 48–87 years (mean age 70 years), see Table 1.
Participants and sampling
Interviews and procedures
The participating dyads were recruited at one university hospital and one county hospital in the south-east of Sweden between March–June 2011. The dyads had previously participated in an intervention study that has been pub-
Eight focus group interviews were performed, and two or three dyads participated in each interview. The interviews took place in an undisturbed room outside the heart failure clinics and lasted between 50–90 minutes. The
might need to be combined with other target variables to induce desired effects on depression, anxiety and quality of life in family members. A 12-week dyad intervention with education and psychosocial support increased patients’ perceived control after three months, but not after 12 months, and no effect was found in the partner group (Agren et al. 2012), which suggests that more frequent professional contacts and ongoing support may be necessary to achieve a higher impact on dyad outcomes. Therefore, the objective of this study was to explore the perceived caring needs in patient–partner dyads affected by heart failure to develop an understanding of potential areas to support.
Methods
Table 1 Description of participating dyads per each focus group
Focus group 1 Focus group 2 Focus group 3 Focus group 4
Focus group 5 Focus group 6
Focus group 7
Focus group 8
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Patient ID
Sex
Age
Diagnosed year
Partner ID
Sex
Age
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19
Male Male Male Male Male Female Male Female Female Female Male Female Female Male Female Male Male Male Male
81 76 65 71 78 74 77 63 79 84 64 69 78 56 55 89 70 69 69
2000 2009 2007 2008 2004 1998 2008 2008 1990 2008 2008 1997 1990 2007 2005 2000 2006 1992 2007
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19
Female Female Female Female Female Male Female Male Male Male Female Male Male Female Male Female Female Female Female
79 73 56 68 76 80 73 62 81 81 59 73 76 48 59 87 69 69 59
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2928–2938
Original article
interviews were conducted by a moderator (first author) who was responsible for directing the discussion and facilitating the conversation flow. The second author also attended the interviews as an observer and was responsible for taking notes and tape recording the interview sessions. The moderator and the observer were both nurses experienced in qualitative research methods. They had no care relation to the participants and had never met them before the interview, nor did the participants know each other. The moderator began by welcoming all the participants thanking them for coming; then, the moderator and the observer introduced themselves. The moderator described the purpose of the study and the interview procedure. The moderator encouraged a conversational discussion tone, to enable the interviewees to talk more freely and interact with each other. An interview guide with eight questions was used, Table 2. The first interview was performed as a pilot to test the interview guide. As the guide worked well, no changes were made to the questions, and the interview guide as piloted was included in the analysis. As an opening question, the participants were asked to introduce themselves and talk a little about their situation. Follow-up questions were asked for clarification and to continue the conversation. At the end of each interview, the observer verbally summed up results so that participants could confirm that everything had been correctly understood and to offer the opportunity to clarify any ambiguities (Krueger & Casey 2009). After the interviews, the moderator and the observer together summarised the interview and made notes on the atmospheres in the group during the interview. The interviews were tape-recorded and transcribed verbatim by a secretary. The first author reviewed the transcriptions for accuracy by comparing them to the audio recordings. Notes from the session were used to supplement the transcription with
Table 2 Interview guide The interview guide was made up the following questions How has your life changed as a result of the heart failure? Do you experience any difficulties managing the heart failure, and if so, what are the difficulties? What is required for you to feel that you have more control of the heart failure? What information/support would you like to have? When should the education/support be given? Does the need for information and support change over time? Do you prefer receiving education/support together with your partner, or should it be given individually?
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2928–2938
Caring needs in heart failure dyads
descriptions of the tone of the speaker’s voice, body language and interactions.
Analysis While eight focus group interviews were performed, no new information was derived after six interviews signifying saturation. Therefore, the sample size of 19 dyads was judged to be large enough to give a variety of experiences, and also to allow sufficient depth in the analysis, which was also confirmed during the analysis. Qualitative content analysis as described by Graneheim and Lundman (2004) was used for the analysis. The analysis was performed in several steps. In the first step, the text was read several times to get a grasp of the data as a whole. The text was then divided into domains, which is the rough structure the text can be divided into with a low degree of interpretation, based on the questions in the interview guide. The text in each domain was condensed into meaning units, each comprising of several words, sentences or paragraphs containing aspects related to each other through their content and context. Each meaning unit was labelled with a code at a low level of abstraction. These procedures were performed as a dialogue between the researchers in an attempt to ameliorate the influence of the researchers’ preunderstanding on the analysis. The codes were interpreted and compared for differences and similarities and sorted into subcategories. Next, the subcategories were examined for underlying meanings. Threads of meaning recurring in different subcategories were formulated into categories. The categories were abstracted and formulated as themes, which formed the basis for the presentation of the findings. These are illustrated with quotations and extracts of conversations from the interviews to increase the transparency of the interpretation. To ensure trustworthiness, each step of the analysis process was discussed until consensus about the interpretation was achieved.
Ethical approval The principles outlined in the Declaration of Helsinki have been followed throughout the study. The study has been approved by the Regional Ethical Review Board in Link€ oping (Dnr 03-568, Dnr M178-04). All dyads received verbal and written information about the study. For the dyads that chose to participate, both patient and partner gave written informed consent before entering the study.
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Findings Two themes and four categories with underlying subcategories describe the perceived caring needs of the dyads, see Table 3. The themes were labelled ‘Dyads perceive a need for continuous guidance through the different phases of the illness trajectory’ with the categories: Continuous guidance through knowledge acquisition and Continuous guidance through supportive health care contact, and ‘Dyads perceive a need to share burden and support with each other and others’ with the categories: Joint dyad education and support reduce insecurity, and education and support can be given and shared in patient–partner groups.
Dyads perceive a need for continuous guidance through the different phases of the illness trajectory In this first theme, the dyads describe a need to learn about heart failure in order to manage everyday life. They felt that it was difficult to sort information found on, for example, the Internet, and they often perceived the information to be frightening. Regular clinic visits and access to a phone number to someone who knows the dyads are vital. Having someone who cared also for the partner’s well-being was perceived as comforting.
difficulties. The dyads experienced that they initially had little knowledge about the disease, and it was difficult to formulate questions. It was also difficult to search for knowledge, information found on, for example, the Internet was perceived by many as frightening and led to insecurity in daily life. Patient 9: You don’t ask them (the questions), you google, read things on the Internet and I think that’s sometimes not so good. You become more frightened perhaps, than if you speak to someone. It’s always better to speak to someone than just reading a piece of paper, definitely.
The need for knowledge was great during the time just after diagnosis, but continuous information was also viewed as important because new questions frequently arouse in everyday life. Many thoughts concerned the future and what would happen in case the heart failure deteriorated, but also practical things such as how much one can exercise and what one can eat and drink. Receiving information regularly and having someone to address the questions to were important for dyads in order to feel that they were in control of the heart failure. Partner 5: I feel that more information is needed all the time. Patient 6: New questions arise depending on, I mean, if I get worse there’ll probably be more questions, so you do need continuous information.
Continuous guidance through knowledge acquisition The dyads described being affected by heart failure often lead to a major transition in life, and both patients and partners had many questions and had experienced many
Patient 5: If I was to get worse, would you not think that it would be good to have more information about what’s happened and what to do next? Partner 6: The more information the better.
Table 3 Examples of subcategories, categories and themes Subcategories
Categories
Themes
Wish for knowledge about heart failure New concerns frequently arise in everyday life Difficult to seek and understand information Being able to phone the nurse for advice and support Regular visits at someone who knows the dyads and the dyads have confidence in Someone who also care for the partners well-being When both get the same information, it provides security in everyday life An opportunity for both to ask questions and get answers Need for joint psychosocial support to handle the life situation Dyads learn from each other An opportunity to share concerns with others in the same situation
Continuous guidance through knowledge acquisition
Dyads perceive a need for continuous guidance through the different phases of the illness trajectory
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Continuous guidance through supportive healthcare contact
Joint dyad education and support reduce insecurity
Dyads perceive a need to share burden and support with each other and other dyads
Education and support can be given and shared in patient–partner groups
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2928–2938
Original article
Continuous guidance through supportive healthcare contact The dyads wished for regular visits to someone who knew them, and they had confidence in. When the visits at the heart failure clinic ended, they had no one to contact. Visits to the primary care physician were perceived as just checkups, and there was no time for asking questions. Several patients reported that they met with different physicians at each visit in primary care, and they felt that some were not as knowledgeable regarding heart failure. Many patients found this distressing and have preferred to continue visiting the heart failure clinic. Partner 7: But I suppose you just have to remain at the heart failure clinic and come back for more visits. It doesn’t have to be with a physician, it could be with a nurse. I mean, they’re very good these heart nurses. They’re experienced, which we have all noticed with (nurse), she was wonderful to speak to and she answers most questions.
Partners described that the nurse at the heart failure clinic was the only one who also took an interest in their well-being. Once a relationship was established, it was easy for partners to confide in the nurse and share their worries. Partner 11: //, not only the person who is sick, but also the partner, because no one asks how you feel as a partner. There are a million thoughts. . .
Another partner said; Partner 1: No one asks how I feel in all of this. . .
All dyads emphasised that they wished to have a healthcare contact, for example the nurse at the heart failure clinic. An opportunity for dyads to seek advice and support during daily telephone hours would increase security. Partner 11: I think that sounds good too, that you also have someone to phone. We don’t have that, a contact person. Patient 11: The preferred option would be to have a phone number to this ward (heart failure clinic). You would be able to phone if you feel something, if you feel a twinge in your chest, and ask what it might be and things like that. You would bypass the health centre altogether.
Caring needs in heart failure dyads
the same information and ask questions, which reduced insecurity. Meeting others in the same situation and sharing the burden in group sessions means an opportunity to support each other and others.
Joint dyad education and support reduce insecurity The dyads all agreed that there was a common need for both the patient and the partner to participate during hospital appointments because the disease affected them both. However, few partners had been invited to the heart failure clinic. Patients felt that it was difficult to remember all the information and then be able to retell it to their partner. Partners also had questions of their own, and without knowledge on heart failure, their ability to support and assist the patient was reduced. Partner 10: I felt it was quite natural that both went because it happened to both of us. As the disease itself was under control, the main worry was treatment and returning to as normal a life as possible. Both individuals need to cooperate if that’s going to work, so I thought that was good.
Living with heart failure means a constant concern for the present and the future. Life can take a step turn, just as a roller coaster and you never know what the next day will bring. Both patients and partners felt that this stress led to changes in mood and short temper that in turn led to more conflicts between them, and these conflicts were something they have not experienced before. Not being able to talk to each other as before created uncertainty. Patients also described a sorrow for their bodily losses. To no longer cope with everyday activities imposed feelings of worthlessness and frailty. Their health made it difficult to participate in social activities as before. Partners, on the other hand, were living with a constant concern for the patient’s health and were anxious when leaving their loved one home alone, which led to social constraints. The partners also experienced an increased burden as they felt compelled to take on more work at home to relieve their loved one. Partner 19: I feel it’s this constant worry, I’m still working and he (patient) is on his own at home some days and he comes up with a lot of things that he’s to do. I find it really hard. It’s the worrying I
Dyads perceive a need to share burden and support with each other and other dyads This second theme describes the need for both the patient and the partner to be present at the clinic visits if the dyad is to share the care. Living with heart failure is perceived as a roller coaster, and dyads never know what issues may arise. Joint visits gave an opportunity for both to receive © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2928–2938
find. . . and I suppose I take on a bit extra, to provide some relief. . .
The dyads described a need to talk to each other about their feelings, but found it difficult to find the courage to do it on their own. They suggested that during joint dyad visits, the nurse could introduce and participate in these difficult conversations, which would make it easier to talk to each other about their concerns.
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Education and support can be given and shared in patient–partner groups Several of the dyads requested regular nurse led meetings in groups with other dyads in the same situation. To meet and talk would make the loneliness less heavy to carry. Partner 18: ‘I know exactly what kind of support I would want and that’s to meet regularly in group sessions with people in the same situation.’
Some participants, especially the partners, also suggested that the group could occasionally be divided into separate patient and partner groups. Some issues could be difficult to discuss with both patients and partners attending, but if the groups were divided, an opportunity would be provided to address issues that each group perceived as particularly difficult. Partner 5: Well, that’s what I thought, that you could separate them (the groups) sometimes, because then you might say other things. You want to be protective, but you still think ‘what will I do when he’s like this?’ You don’t want to say that to his face, but you might get some tips, that’s what I mean. Perhaps that could work.
Partners described feelings of hopelessness that were difficult to address with their loved ones and a disappointment that life had not turned out the way they had hoped. They watched over their loved ones day and night, which made them feel tired, isolated and dejected. They also carried a sense of guilt when they sometimes put their own interests first and attended social activities alone. Life constantly revolved around the patient and his/her needs, and partners expressed a need for personal time. Sharing burdens and experiences with others in the same situation was perceived as a relief. The partners could support each other and discuss how to handle difficult situations and also be supported to make demands on the patient to help with simple chores. Some patients found it difficult to ask certain questions when the partner attended. In particular, questions about the future and the prognosis were difficult to address as they wished to protect their partners from certain information. When the nurse participated, it was possible to receive answers to questions, while at the same time receiving support from others who shared the same thoughts and experiences. However, some dyads did not agree with the need for separate patient–partner groups. The patients felt that personal matters should not be discussed with others without both parties participating. Patient 5: But we really don’t have secrets, do we?
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Partner 5: No, it’s a not secret, that’s not what I meant. Patient 5: Surely, we can be straight with each other. Partner 5: Yes, I suppose so.
Discussion This study sheds new light on the psychosocial support needed by dyads affected by heart failure. The two themes summarising the findings were as follows: Dyads perceive a need for continuous guidance through the different phases of the illness trajectory; and Dyads perceive a need to share burden and support with each other and others dyads. In the current study, the dyads emphasised a need for continuous guidance by a supportive healthcare contact in which the dyads felt confidence in, and an ongoing need for knowledge even after several years. A previous review also concluded that patients with heart failure associated good care with continuity and that the same care provider should care for both the patient’s and the family members’ wellbeing (Jeon et al. 2010). Most of the patients had previously gone for follow-up visits at outpatient heart failure clinics, but had now been referred to primary care. In primary care, the time between the visits varied and few partners had been invited to accompany the patients. Our findings contrast with a recent study that concluded stable patients on optimal medical therapy do not benefit from long-term follow-up at heart failure clinics regarding death, readmissions and quality of life (Schou et al. 2013). In the current study, the dyads experienced the transfer to primary care as insecure and described that the new caregiver did not understand their need for support and were hard to reach, which led to insecurity in everyday life. Partners sometimes found it distressing and burdensome to care for their loved one, and the care providers at the heart failure clinic were the only ones who also cared about their situation. Another study examined caregivers of patients seriously ill with cancer, heart failure and COPD, and found that they desired more help from the health care and family, and an anxious coping style was significantly associated with caregiver psychosocial-spiritual well-being. This may suggest that caregiver burden is rather a universal experience that can be buffered by social resources and successful coping styles (Burton et al. 2012). Thus, a phone number to the heart failure clinic both patient and partner can use could be a sufficient complement to primary care in order for the dyads to feel less anxious and more cared for if and when new questions arise, or in case of deterioration. The dyads agreed that it is important for both patient and partner to receive information, but it is known that © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2928–2938
Original article
healthcare professionals mainly invite only the patient to the outpatient clinic visits (Molloy et al. 2005). Because partners play a key role in supporting the patient at home both the patient and the partner need the same information and have an opportunity to ask questions. Lowson et al. (2013) describe family carers as ‘conductors’ to older adults, making strong contributions to maintaining good care at home throughout the illness trajectory. Then, when the care recipient becomes hospitalised or needs to seek care, family carers find themselves playing the ‘second fiddle’, and the possibility to influence decisions and take an active part in the care is greatly diminished. In the light of these findings, it is clear that healthcare professionals need a different approach, where they recognise partners and family members as important actors in the care of the patient. Including partners in the care facilitates patient’ and partners sharing the care in everyday life. The substantial symptom burden that characterises heart failure and the restrictions related to the disease can lead to symptoms of depression, and patients’ mood swings often transfers to partners and family members (Jaarsma et al. 1999, Martire et al. 2004). Both the patients and the partners described changes in moods and short temper, which in turn led to arguments and internal conflicts that were difficult to talk about. Contrary to these findings, previous research has found that shared experiences of heart failure bring spouses closer together and strengthens their relationship (Mahoney 2001, Bosworth et al. 2004). Retrum et al. (2013) in turn observed the importance of care provider sensitivity to dynamics occurring between the dyad ‘behind the scene’. Incongruence in communication was associated with conflicts and distress within dyads, which could lead to poor-quality heart failure care. Family members, usually the spouse, are frequently involved in the self-care, but they sometimes express this support in ways perceived negatively by patients. Partners need help to communicate support in ways patients will perceive as positive rather than nagging and criticising (Hartmann et al. 2010, Rosland et al. 2010). The result implies that if dyads are to be able to share care, there is a need for relationship-focused family interventions helping dyads to communicate and express their feelings to each other. When care providers have established a relationship with the dyad, there can be fruitful conversations helping dyads support each other. Several of the dyads emphasised the need for sharing concerns and experiences with other dyads in the same situation. Group sessions with education and support are frequently used in the rehabilitation after a myocardial infarction, but not in patients with heart failure and their partners (Clark et al. 2005). Support groups can provide a © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2928–2938
Caring needs in heart failure dyads
sense of validation, relief and comfort, as well as overcome social isolation through meaningful social activity (Chang et al. 2004, Jeon et al. 2010). Exchanging experiences with dyads in the same situation in groups where care providers also take part provides an opportunity to learn both from other dyads and from professionals. Some partners also asked for separate patient groups and partner groups. Some issues can be difficult to discuss when both the patient and their partner attend but if the groups are divided, there is an opportunity to address issues that are perceived as being particularly difficult in each group. The participating patients were reluctant to the proposal to be divided into two groups where they were not with their partner and found it a little strange that partners would talk about them without them being present. However, the result has demonstrated that patient–partner dyads prefer a more active role regarding healthcare situations. Further investigations will determine whether groups should be divided or not.
Methodological considerations Recruiting participants from both the control group and the intervention group from a previous intervention study enriched the result as they had different experiences of support and education. Choosing focus groups instead of individual or dyad interviews may have enriched the results when the narratives are perceived as rich. The interaction between the participants highlighted different aspects, and the questions asked were open-ended. However, being interviewed in a group may be a barrier for some of the invited dyads, who therefore chose not to participate. At the end of the interview, participants had the opportunity to discuss topics they considered important that were not addressed during the interview. The observer’s summary at the end gave the dyads an opportunity to reflect on what had been said and correct any misinterpretations. During the interviews, the atmosphere was openhearted and the participants mostly focused on the issues.
Conclusion In summary, the result indicates there is a need to improve education and support for patient–partner dyads affected by heart failure. To date, healthcare professionals do not fully recognise the dyads caring need. The result of this study may be used to improve quality and content in the standard care and as a guide when designing new dyad intervention studies.
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Clinical Research S€ ormland, Sweden and Link€ oping University and Swedish Research Council, Sweden.
Relevance to clinical practice Clinical implications of the study are to aim at providing continuity in the healthcare contacts throughout the illness trajectory. An opportunity for dyads to seek advice and support during daily telephone hours would increase security. Furthermore, including partners in follow-up and organising support groups where dyads can meet and share their burden and where nurses could provide support may be one way to ease everyday life for the dyads.
Disclosure The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/ethical_ 1author.html), as follows: (1) substantial contributions to conception and design of, or acquisition of data or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content, and (3) final approval of the version to be published.
Acknowledgements We would like to thank the participants in the study. The study was financially supported by grants from Centre for
Conflict of interest The authors have no conflict of interest.
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