, Julie Burkin1, Catherine Moffat1 and Anna Spathis1
(1)
Department of Palliative Care, Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK
Abstract
There are a number of studies which explore the lived experience of being a carer (McNamara and Rosenwax, Soc Sci Med 70:1035–1041, 2010; Currow et al., Int J Chron Obstruct Pulmon Dis 3(4):753-762, 2008; Curt et al., Oncologist 5:353–360, 2000). This important data provide healthcare professionals with valuable insights into what it is like to live with a patient experiencing the consequences of a long term or progressive illness with symptoms like breathlessness. Booth et al. (Palliat Suppor Care 1:337–344, 2003) discovered that carers of breathless patients suffer physically and psycho-socially in a different way to patients, but with equal severity. Evidence to support the effectiveness of specific interventions to improve the quality of life for carers is sparse but this is an emerging field of research. Vernooij-Dassen et al. (2011) reviewed cognitive reframing interventions, which are intended to reduce carer stress by changing their beliefs and perceptions regarding their roles and responsibilities as carers. They found that these had a possible impact on reducing stress, anxiety and depression in carers of people with dementia. Other studies have shown that interventions for people experiencing breathlessness have had a subsequent favourable effect for carers also (Farquhar et al., Palliat Support Care 8:143–149, 2010). Candy et al. (Cochrane Database Syst Rev (6):CD007617, 2011) also reviewed the evidence for supporting carers of patients in the terminal phase of disease. They found that “supportive interventions” may reduce psychological distress and improve quality of life but recommended further research to understand better any specific benefits on physical health and well-being and to elucidate the interventions of benefit for carers.
Evidence
There are a number of studies which explore the lived experience of being a carer (McNamara and Rosenwax 2010; Currow et al. 2008; Curt et al. 2000). This important data provide healthcare professionals with valuable insights into what it is like to live with a patient experiencing the consequences of a long term or progressive illness with symptoms like breathlessness. Booth et al. (2003) discovered that carers of breathless patients suffer physically and psycho-socially in a different way to patients, but with equal severity. Evidence to support the effectiveness of specific interventions to improve the quality of life for carers is sparse but this is an emerging field of research. (Vernooij-Dassen et al. 2011) reviewed cognitive reframing interventions, which are intended to reduce carer stress by changing their beliefs and perceptions regarding their roles and responsibilities as carers. They found that these had a possible impact on reducing stress, anxiety and depression in carers of people with dementia. Other studies have shown that interventions for people experiencing breathlessness have had a subsequent favourable effect for carers also (Farquhar et al. 2010). Candy et al. (2011) also reviewed the evidence for supporting carers of patients in the terminal phase of disease. They found that “supportive interventions” may reduce psychological distress and improve quality of life but recommended further research to understand better any specific benefits on physical health and well-being and to elucidate the interventions of benefit for carers.
Introduction
He says he can’t breathe but he has enough air to yell at me
It’s terrible to see it………and you feel so helpless, so useless, so useless, I don’t know how you can help really
(Booth et al. 2003)
It is easy for clinicians to focus exclusively on the person experiencing breathlessness, inadvertently overlooking the impact on the carer or loved one(s) and how they feel about witnessing this distressing symptom. It can be as frightening to watch someone in the grip of an episode of breathlessness as it is to experience it personally. This is particularly true if the carer has no idea what to do to manage it, which can lead to a sense of helplessness or futility. Breathlessness can be extremely upsetting to experience, and to watch this can evoke exactly the same emotions, often coupled with a sense of helplessness if the individual is unable to reduce the impact on their relative.
As well as having to observe someone they are caring for experience breathlessness on a regular basis, there are a number of other factors specific to being a carer which need to be considered. Carers of those with advanced cardio respiratory disease are often over the age of 60 and have their own health problems. Many will already have a caring role for children, grandchildren and/or elderly parents. Often reluctant to express or address their own needs and feeling a need to put the patient first, it is common for carers to relinquish their own work roles to care for their loved one, which will invariably have a financial and social effect on them as individuals. As well as a change in working role, the carer may also have lost social contacts with friends and acquaintances due to the increasing demands on their time. By the same token, many hobbies or interests may have had to be resigned.
On the other hand, caring for someone can be a very positive experience and one which brings people together, sharing time and activities that they have not previously had the opportunity or inclination to do. Caring for someone who is breathless, regardless of whether this is a positive experience or not is usually very tiring and the carer will often describe feelings of fatigue and even exhaustion.
It is vital to consider how to support the carer as part of any effective self-management programme or intervention for breathlessness as they are a key component in how the person will manage this symptom.
Case Study
Mrs Orange is a 62 years old lady. She has been married for 44 years and she and her husband have three children and seven grandchildren, whom she provides child care for to enable her daughters to continue to work part-time. Mrs Orange has recently taken on the caring role for her husband, who was diagnosed with COPD 3 years ago. He is becoming more breathless and, as a result, she prefers him to stay at home and rest, which has meant that the household and gardening tasks that would usually be carried out by her husband now fall to her. Mrs Orange did used to have a part-time job as a receptionist in the local GP practice, a role which she thoroughly enjoyed, but has had to resign due to the increasing demands on her time with caring for her husband. She is terrified by his breathlessness, and although she does not want him to go to hospital, feels reassured when she calls for an ambulance as they are able to relieve his breathlessness. She does try to encourage him to take big breaths, to try and get more air in when he is breathless, but he just gets cross, and snaps at her, which makes her feel even more desperate. He doesn’t like the grandchildren coming round any more, what used to be fun, now feels so stressful.
To help us understand some of the specific issues for carers, it is helpful to look at these in relation to the breathing, thinking, functioning (BFT) model outlined in Chap. 1.
Breathing
We have discussed patients’ misperceptions of needing to take big breath in to “get more air” and the same misunderstanding could equally be applicable to carers. Upon seeing their loved one becoming increasingly breathless and distressed, carers can often give well-meaning advice, such as “take a big breath” or “big breaths in” in an attempt to help when this only exacerbates the problem. There may also be a tendency to draw upon personal experiences, such as being in labour or breathing control for sporting activities.
Thinking
Often carers will describe feelings of frustration, anger, worry, anxiety, distress or guilt. Indeed sometimes they may be feeling these emotions but for many reasons be unable or reluctant to express them.
Negative Emotions
Frustration
Caring for someone experiencing breathlessness can be incredibly frustrating as it often places limitations or significantly alters usual activities and routines. Carers may be unable to carry out the things that they enjoy because of the constraints imposed by their partner’s condition. They may also become frustrated about not knowing what to do either for the patient, the patient’s condition or to manage their own mental and physical wellbeing.
Anger
Most models of grief incorporate a period of anger, and with the likelihood of having many losses to contend with when living with someone experiencing breathlessness (loss of the routines, shared activities, the person they know as their partner) it is not surprising that carers may feel a certain level of anger at some point. These feelings of anger may manifest in many ways and may also be aimed at the patient, healthcare professionals, others around or themselves…Carers may occasionally feel bitter; about what has happened to them in life, about what they may see as the self-inflicted nature of the relative’s illness or about the lack of help they perceive they get from the NHS or from friends or society in general. Anger, if aimed at the person they are caring for, may also be reciprocated, which can result in an uncomfortable and unhappy situation needing sensitive and careful handling in order to suggest any helpful strategies to manage
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