Developing supportive care for family members of ... - Springer Link

Support Care Cancer (2007) 15:1259–1269 DOI 10.1007/s00520-007-0233-z

ORIGINAL ARTICLE

Developing supportive care for family members of people with lung cancer: a feasibility study Alison Richardson & Hilary Plant & Sally Moore & Jibby Medina & Amanda Cornwall & Emma Ream

Received: 30 November 2006 / Accepted: 1 February 2007 / Published online: 2 March 2007 # Springer-Verlag 2007

Abstract Purpose Families provide crucial support, yet their own needs often go unrecognised and, as a consequence, remain unmet. The purpose of this study was to evaluate a newly developed supportive intervention for family members of patients with lung cancer. Materials and methods A consecutive convenience sample of 25 family members of people with lung cancer received an individualised supportive intervention from a support nurse over a period of 12 weeks. This involved in-depth assessment followed up with a tailored plan of ongoing support to address informational, emotional, social and practical needs. A concurrent mixed method design explored perceptions and outcomes of those receiving the intervention and assess its appropriateness, acceptability and feasibility. Data were collected through a semi structured telephone interview with family members, and support nurses maintained a contact log. A questionnaire addressed emotional well-being [general health questionnaire (GHQ-12)], quality of life [quality of life family version (Family QoL)] and needs for care [family inventory of needs (FIN)]—at baseline and week 12. A. Richardson (*) : H. Plant : J. Medina : E. Ream Florence Nightingale School of Nursing & Midwifery, King’s College London, 5th Floor Waterloo Bridge Wing, Franklin Wilkins Building, 150 Stamford Street, London SE1 9NN, UK e-mail: [email protected] H. Plant : A. Cornwall Guys and St Thomas’ NHS Foundation Trust, London, UK S. Moore The Royal Marsden Hospital NHS Foundation Trust, London, UK

Results Family members perceived they had derived benefit from the intervention. Certain elements clearly emerged as important for participants, including being listened to by someone who could facilitate emotional expression, being provided with individually tailored information and receiving practical help and advice. Outcomes mapped to five main areas: information needs, communication between family members, emotional wellbeing, being supported and facilitating family member’s role. There was a trend for more needs to be met and quality of life and emotional well-being to improve at week 12. Conclusion This study has demonstrated that a supportive intervention for family members of patients with lung cancer can be delivered to good effect by experienced cancer nurses. The active components of the intervention have been distinguished and provide the basis for development of a larger sufficiently powered trial. Keywords Carers . Family members . Cancer Supportive care . Quality of life . Needs assessment

Introduction The physical burden of cancer may be exacerbated by emotional, social, financial and practical issues; these not only affect the person with cancer, but also those close to them. Family members and close friends watching a loved one experience cancer and its treatments can struggle to cope. Multiple issues come into play, including the physical demands of caring, emotional strain, fear, uncertainty, altered roles and lifestyles and matters of personal and sexual intimacy [1]. Evidence suggests that family members have minimal contact with health professionals,

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ineffective support structures and suffer from a lack of information [2, 3]. Support for carers at key transition points is crucial, particularly at entry into the caring role [4, 5]. Currently, however, family members of people with cancer are more often identified in terms of providing support rather than needing it [6]. Family members tend to subordinate their own needs to those of the patient, needs they perceive as more important and valid [2]. Emphasis is on trying to keep things going on a normal basis and, as a consequence, their own needs remain invisible and ignored. Current provision for informal carers has been described as crisis intervention, where professional services ignore successes and reward failure [7]. In the health, sociological and political literature, the term ‘carer’, to define family members and those close to the patient (many of who have chronic illness), remains commonly used and accepted, even if many of those who provide care do not readily recognise themselves as belonging to a group of carers [8]. ‘Caring’ can be used to describe both practical and affective activities; ‘Caring for’, indicating the practical dimension of caring and ‘caring about’, the emotional dimension [9]. However, for those close to someone diagnosed with cancer, the caring dimensions are likely to be both practical and emotional, with the potential to be exhausting and overwhelming particularly if patients are unwell and/or the prognosis is uncertain. Care of a person with cancer may involve family members providing practical help, giving medications, dealing with symptoms of cancer and providing emotional support. If health professionals wish to increase support for family members and those close to people with cancer, it is important to ensure that in using the term ‘carers’ to define them, this does not in itself prove an obstacle to them accessing support. In response to these issues regarding the term ‘carer’, we prefer the term ‘family member’ to define the population of interest and to use the definition of ‘family’ advocated by the Canadian Hospice Palliative Care Association [10]. Here, ‘family’ is defined as ‘those closest to the patient in knowledge, care and affection. This may include the biological family, the family of acquisition (related by marriage/contract) and the family of choice and friends’ [10]. Optimum nature and timing of support throughout the illness experience and how supportive interventions for family members of people with cancer can be delivered sensitively and effectively remain unknown [11]. Studies to date have focused mainly on support during the palliative phase of illness and for family members who are highly distressed, clinically depressed or anxious. Where supportive interventions have been tested, they have tended to use specialist services such as psychology and psychiatry to meet the needs of the most distressed [6, 12]. These

Support Care Cancer (2007) 15:1259–1269

strategies have failed to address the broader experience of family members of people with cancer. Evaluating interventions that are insufficiently developed and defined is problematic [13]. This study was conceived as an initial attempt to identify the components of a supportive intervention that would address the needs of all family members of people with cancer. Lung cancer was selected as the initial patient population, as it remains one of the most challenging cancers in terms of mortality and morbidity, and there is evidence to suggest that family members of people with lung cancer feel isolated and invisible to professional carers [14]. Lung cancer is the second most common cancer after breast cancer in the United Kingdom and the commonest cause of death [15]. The physical, psychological and social impact of lung cancer on patients and their family members is significant [2, 3]. This is because most people diagnosed with lung cancer present with advanced disease (often very symptomatic) and die very quickly, leaving little time for patients and their family members to come to terms with what is happening to them.

Materials and methods Overview The purpose of the study was to evaluate a newly developed supportive nursing intervention for family members of patients with lung cancer. It sought primarily to explore its potential to effect change in key aspects of carers’ experiences and outcomes. Moreover, it provided an opportunity to assess the adequacy of instruments to measure family member care needs, emotional distress and quality of life. Essentially, the study sought to explore perceptions and outcomes of those receiving the intervention, and to assess the appropriateness, acceptability and feasibility of it. The study adopted a concurrent mixed methods approach. Thus, it collected quantitative and qualitative data [16] and converged data from different sources. This enabled illumination of both the process and outcome of the intervention to understand the nature and relative contribution of the different components. Data collection involved gathering textual (family member interviews) as well as numeric data (i.e. family member outcome measures). As the priority was to identify and understand the components of the intervention, the qualitative aspect of the study assumed greater priority. The quantitative aspect, namely administration of standardised measures of outcome at baseline and week 12, was employed to assess whether selected instruments had the ability to sufficiently capture the variables of interest and might perform satisfactorily in


the context of a randomised controlled trial. Contact records maintained by the support nurses were used to monitor how the intervention was delivered and enable its detailed description. Description of the intervention In defining and developing the intervention, the research team was keen to recognise that most family members do cope with the task of caring for a loved one with cancer and that most want to be seen as strong, positive and able to carry on as normal [1]. Its main purpose was to recognise, seek to build on and maintain the expertise, competence and well-being of family members. It was conceived as a person-centred approach [17–19] that was proactive, driven by assessment of need and focussed on the family member rather than the patient. It had both educative and supportive components. It was designed to explore and address the emotional strain of caring and the altered roles and relationships that a diagnosis of cancer can bring about, provide individualised information and emotional, social and practical support and promote the management of uncertainty and fear about what may happen. The intervention was delivered through two core components. First, family members underwent a systematic ‘assessment of needs’ interview with a support nurse at the hospital. This focussed on the family member’s emotional, social, informational and practical needs and often commenced with them having an opportunity to tell their story of what had happened so far. Based on this, a tailored and individualised plan of 12 weeks on-going support was offered. This could take place either face-to-face or by telephone. We anticipated that family members would differ in terms of their support needs. Therefore, a flexible and responsive model of support was developed where family members could choose the level and type of support they received. The intervention was ongoing, rather than consisting of a fixed number of sessions in recognition that levels of support needs may alter over time, depending, perhaps, on treatment schedules and the well-being of the patient. The intervention was targeted at, or near to, diagnosis because of the often short illness trajectory of lung cancer and the high incidence of physical and emotional morbidity associated with this disease. Each family member was allocated to a specific support nurse. The three support nurses involved in delivering the intervention were hospital-based senior cancer nurses with advanced clinical and communication skills and in-depth knowledge of the care of patients with lung cancer. Throughout the course of the study, the intervention was subject to a constant process of review and refinement encouraged through a series of meetings. These meetings acted as a form of supervision and peer support also.

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Participants A consecutive convenience sample of family members of patients newly diagnosed with lung cancer at a specialist cancer centre in London, United Kingdom were invited to participate. The initial approach was made through patients attending clinic who were asked for permission for a researcher to introduce the study to their family member. It was planned to recruit family members of 20 patients who had been diagnosed with lung cancer in the past 8 weeks. To be eligible, family members had to be aware the patient had a diagnosis of lung cancer, able to physically and emotionally cope with the research protocol, able to speak and write English and be over 18 years of age. The study was approved by the Local Research Ethics Committee. Data collection Data were collected from three main sources: 1. A ‘carer questionnaire’ was administered pre-intervention (baseline) and after 12 weeks. 2. A telephone interview with family members was conducted at the conclusion of the intervention, at the 12-week point. 3. A ‘contact log’ was kept by the support nurses to record the frequency and nature of their contact with family members during the intervention period. In addition, demographic data were collected at baseline. 1. Carer questionnaire A questionnaire comprising a selection of standardised measures was administered at baseline and week 12. The questionnaire was developed from a number of existing outcome measures selected to assess family members’ care needs, levels of emotional distress and quality of life. These were the elements we anticipated our intervention would impact upon. The questionnaire comprised: a) The 12-item general health questionnaire (GHQ12) [20]; a tool originally intended for use in general practice as a screening questionnaire for detecting general psychiatric morbidity and now widely used to assess emotional distress. It consists of a list of 12 items regarding general health scored using a four-point scale (best–worse). b) The quality of life family version instrument (Family QoL) [21]; which measures quality of life of a family member caring for a patient with cancer. Thirty-seven items are grouped into four domains: physical well-being, psychological wellbeing, social concerns and spiritual well-being. Respondents indicate the degree to which they

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agree/disagree with each statement by means of an 11-point scale (0–10), where 0 = worst outcome to 10 = best outcome. c) The family inventory of needs (FIN) [22]; which measures the perceived importance of care needs of family members of patients with advanced cancer and the extent to which they feel their care needs have been fulfilled. It is a 20-item tool with two subscales: the importance of need subscale and fulfilment of needs subscale. Each item is rated with a score from 0–10, where 0 = not at all important’ and 10 = very important. Each need is then marked to indicate if it has been ‘met’, ‘partly met’ or remains ‘unmet’. 2. Family member interview Semi-structured telephone interviews with family members were undertaken at approximately 12 weeks after the intervention had commenced. These were conducted to gain insight into the perspectives and opinions of family members regarding the intervention and the way it had been delivered. A schedule was developed to guide the interview detailing: family members’ experience of contact with the support nurse, their perceptions of ways in which support nurse had helped meet their needs, preferences for an ease of contact with support nurse, general impressions of the intervention and examples of things that helped or were unhelpful. The interviews were audio-taped. 3. Support nurse contact log Documentation was developed for the support nurses to track the frequency and nature of contact episodes between them and the family member. The contact log recorded the date, length, method (telephone/face-to-face) and the reason for each contact with family members. It also summarised what was addressed during each contact episode, the type of support offered, including any onward referrals to other professionals and agencies and any planned future contact. Analysis Data from the questionnaires were entered into the statistical software package SPSS release 14.0 for Windows. Analysis was largely exploratory and descriptive (generating frequencies, means, ranges). Tests were also undertaken to compare pre- and postintervention scores on the GHQ-12 and Family QoL using paired sample t tests. A p-value of ≤0.05 indicated statistical significance. Data from the support nurse contact logs were in the form of free text records. An index was created from a sample of records. Following discussion and agreement within the research team, the index was applied to the data. Frequencies were calculated using Excel. The reason for contact, type of intervention, number of contacts with each carer, who initiated the contact and method, length and outcome of contact were calculated.


Data from telephone interviews with family members were subject to framework analysis [23], a matrix-based analytic method which facilitates rigorous and transparent data management. The name ‘framework’ comes from the ‘thematic framework’, a central component of the method. The thematic framework is used to classify and organise data according to key themes, concepts and emergent categories and is evolved and refined through familiarisation with the data and labelling. Initially, two members of the research team familiarised themselves with a sample of the interview transcripts and identified recurrent themes or concepts. These themes were sorted and grouped using a smaller number of broader, higher order categories and placed within the overall framework. The framework was then applied to all the transcripts by the same two people. In keeping with the concurrent mixed-method approach, analysis and interpretation will combine the two forms of data to seek convergence among the results.

Results A total of 36 patients were introduced to the study and consented to the researcher accessing their family members. Forty-four family members (39 women, 5 men) were invited to participate in the study. Twenty-five (57%) family members (of 21 patients) agreed to participate. Figure 1 provides an indication of accrual and attrition during the course of the study. Reasons for declining to participate included sentiments such as ‘too much going on at the moment’ (010) and ‘it not being my sort of thing’ (003). Two participants declined to provide data at week 12 on the grounds they felt their lives had become particularly stressed and busy. Most consenting family members were female (23, 92%) and most commonly the daughter/step-daughter (14, 56%) or wife/partner (7, 28%) of the patient. Five family members were bereaved by the end of the 12-week study period. The main findings presented in this paper relate to the structure, nature and outcome of the supportive intervention provided by the support nurses. Structure of the intervention All but one of the support nurses’ interventions with family members commenced with the ‘assessment of need’ interview which lasted between 30–105 min. On the one occasion this did not take place, the patient had become terminally ill very suddenly, and an interview was not convenient for the family member. Interviews were conducted either face-to-face (75%) or by telephone, depending on family member choice. The mean duration of the ‘assessment of need’ interview was 66 min (range 30– 105 min), with most (67%) lasting over 1 h.


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Fig. 1 Flow diagram to illustrate participant accrual and attrition during the study

Patients approached and consented N = 35

Carers accessed and approached N = 44 Carers declined N = 19 Carers recruited N = 25

Data at baseline N = 25

Females N = 23

Males N=3

Data at week 12 N = 23

Males N=2

Data in the support nurse contact logs revealed that they had 134 subsequent contact episodes during the 12week intervention period. Most (83%) of the contact took place over the telephone, 16% were face-to-face, and one contact was by email. Most (85%) contact episodes lasted less than 20 min (range 1–105). The average number of days to elapse between the contact episodes was 12 days (range 0–49). Seventy-five per cent of contact was planned. From the interview at week 12, all participants expressed satisfaction with the way the intervention was structured, although this varied, depending on individual social circumstances. Some preferred face-to-face contact, others preferred telephone contact and some a combination of the two. They particularly appreciated that contact was tailored to their individual situation, fitting in with their lifestyle and other commitments as far as possible. They valued that the support nurses were flexible in their approach and would schedule to see them when they were up at the hospital— rather than making a separate appointment (unless they wanted it).

Females N = 16

Females N = 21

Males N=2

Bereaved N=5

Bereaved N=0

Nature of the intervention The support nurse contact logs provided an account of the nature of each contact episode. Ten different elements were identified as comprising these contacts (Table 1). The most frequent elements delivered were: – – –

information/advice giving (64/134, 48%) monitoring family member’s well-being (52/134, 39%) and listening (49/134, 37%).

In almost half, there were elements of information/ advice giving, and in over a third, monitoring of family member well-being and listening. The majority of information/advice giving involved: symptoms and symptom control (21%), the treatment process (15%), managing the uncertainty of living with someone with lung cancer (13%) and the disease process (10%). Telephone interviews with 23 (92%) family members describe their perceptions of the nature of the intervention.

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Table 1 Percentage of contact episodes on which each of the ten elements were delivered (N=134) Elements of intervention

N

Percentage

Information/advice giving Monitoring family member’s well-being/maintaining continuity in nurse–family member relationship Listening Enabling expression of emotion Helping family member ‘navigate the system’ Acknowledging and exploring patient’s condition Bereavement support Acknowledging and providing reassurance over role as family member Benefits Helping with decision-making

64 52 49 28 20 18 18 16 4 1

48 39 37 21 15 13 13 12 3 1

The percentages do not add up to a total of 100%, as these are calculated as a proportion of 134 contact episodes.

The most striking feature from the data was the consistently positive descriptions of the family members’ interactions with the support nurses and how helpful they found these. Certain elements clearly emerged as important. We refer to these here as the ‘therapeutic ingredients’ of the intervention and have grouped them into five sub-themes for clarity of presentation, although clearly, there is overlap between them. Therapeutic ingredients of the intervention a) Knowing someone was there This was an over-arching theme that ran throughout the data and appeared to have been the most significant to participants. It was important to know that there was someone available and accessible to them who they could contact if needed; ‘I know I’ve got someone there to speak to if things get a bit too much.’ (002) ‘She was just there. She was there for you and you knew she was there for you.’ (022) ‘I think even if I just wanted someone to talk to, that knew me and knew what had happened, I feel that I could ring her.’ (004a) All but one of the interviewees mentioned the importance of knowing that someone was there to support them. This appears to have provided security for participants when they were feeling vulnerable and insecure. ‘Just a real ease in the sense that we were very aware that we did have someone we could pick up the phone to at any time. To put our minds at rest if we had any problems or queries, questions whatever.’ (011) This did not necessarily mean that participants were constantly contacting the support nurses, but rather, it was the knowledge they could if they wanted to that was very

important. The support nurses worked roughly to office hours (i.e. 9 A.M. –5 P.M., Monday–Friday), and participants on the whole did not expect them to be there all the time (although one woman did wish someone had been available at the weekend). What was important was the confidence that they would be responded to as soon as the support nurse was able; ‘If you rang her and she wasn’t available, you could leave a message and she would always call you back.’ (004b) b) Individually tailored information There were several important issues with regard to both the nature of the information and the way in which it was given. Expert knowledge was important to several family members; ‘The honesty and her knowledge really. She was so knowledgeable because she was a specialist purely in lung. As opposed to (the palliative care nurse) that was just, she (palliative care nurse) wasn’t specialised, she just cares for you in general.’ (011) The information that was given by the support nurses was perceived as different in quality from the information received from other professionals (for example chemotherapy nurse or doctors). Some of this was because participants felt that it was at the right level and tailored to their needs; ‘She was very clear when she spoke. She didn’t insult my intelligence or anything, but then on the other hand she didn’t blind me with technology. She just kept it very simple with regards to medical procedures and that sort of thing.’ (019) The support nurses supplemented and filled in the gaps left by information given in other ways. Several expressed how they did not always find written information helpful; ‘I think verbal is better. I mean when you’re trying to plough through loads of literature and such, it doesn’t always sink in. I think the personal approach is better.’ (011)


Some of the information given was relatively straightforward about treatment and side effects. However, other information concerned difficult and emotionally complex issues such as prognosis and what to expect in the future; ‘So it was a huge relief really, it was part of the burden being taken off my shoulders because I knew what to expect as far as she (the patient) was concerned.’ (002)

The opportunity to ask questions and to feel at ease in asking them was reported by 14 of the participants as being helpful. c) Active listening One of the elements of the intervention that participants frequently commented on was the feeling of being listened to in a manner that conveyed that what they had to say was important and relevant. It also seems to have been important that they did not feel rushed. The support nurses gave the impression of having time to listen to their concerns. ‘It didn’t feel like she was looking at her watch when she was with you. She would sit there.’ (004b) ‘I think she listened. She listened to what we had to say and she just sort of helped.’ (014b) Listening to their stories appeared to have been helpful in acknowledging their experience, giving the feeling of being understood, but also in creating the relationship between support nurse and the family member. d) Allowing expression of emotion Much of the work that was done with family members during the study period was intensely emotional. For many, this was the most difficult experience they had faced in their life. For others, it brought back memories of other difficult times in the past. The environment and/or relationship created within the intervention allowed family members to express difficult feelings and distress. ‘I always feel good when I come out from seeing her. You sort of feel a bit positive. I know its not positive with my mum, but, you sort of feel better in yourself that someone’s listened to you... how you’re feeling... and, when I’ve had a cry, she’s been there... It’s been quite good.’ (014a) ‘She was my way that I could... vent off steam if you like. She’d put things in perspective for me bit.’ (002)

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distress us again and we’ll probably need that support and someone to talk to, just to calm us back down and bring us back to reality.’ (022) Several participants expressed how helpful it was to have someone to talk to without having to worry about the effect that their feelings and thoughts would have on them ‘I could say things to her that I couldn’t say to, well I felt I couldn’t say to other members of the family. I could say what I wanted to without fear of upsetting anyone.’ (002) This is particularly pertinent when family members are concerned with protecting others from their difficult emotions and so may find few opportunities to openly express feelings and concerns. e) Practical help and advice Participants reported receiving practical help and support from the nurses in a variety of ways, for example benefits advice, information about community support, referrals to other professionals (e.g. counsellors) and facilitating appointments and investigations. In addition, support nurses were sometimes described as being a ‘go between’, able to liaise with the different professionals involved in a patient’s care. ‘She helped us get the appointments early in the morning from the middle of the afternoon and so that worked out better.’ (016b) ‘She was our bit of contact because she could obviously get hold of the doctors... she was our middle man.’ (029) Outcomes of the intervention It was anticipated that the intervention might impact on a number of outcomes, principally quality of life, the degree to which care needs were met and emotional well-being. In the telephone interviews, family members identified a range of outcomes as a result of receiving the intervention. These can be grouped into five main areas: information needs, communication between family members, emotional well-being, being supported and facilitating family member’s role.

The fact that the intervention was longitudinal and intended to support family members throughout the course of the illness meant that they could anticipate being supported through the difficult times ahead.

a) Information needs The need for information and to understand the information that they had been given was important for many participants. This need was largely met—except for some of the more existential questions about living with uncertainty;

‘When the cancer returns, that will be the next time that I’ll probably be ringing her and I think that will

‘Everything was answered. Everything we wanted to know.’ (009)

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b) Communication between family members Participants acknowledged how difficult communication amongst family members could be in emotionally stressful situations such as cancer. The support nurses were able to facilitate some improvements in this area; ‘Because sometimes when you’re very close to somebody, it somehow makes it more difficult to talk about things... And sometimes you find it’s, you know, your just a bit too close to the problem to discuss it. And it was nice to, we knew if we rang (the support nurse) she could help us sort through it.’ (010b) c) Emotional well-being To a varying degree, participants were able to articulate how distressed they were about their situation. In fact, although some participants did get upset during their contact with the support nurse, they acknowledged in the telephone interviews that seeing them had a positive impact on their emotional well-being and ability to cope; ‘It just seemed to take the stress out of it.’ (009) ‘Put our minds at rest.’ (011) ‘When I’ve had a bit of a panic I phone her up and she’s sorted me out.’ (018) Scores on the GHQ-12 supported this finding, showing a reduction in family members’ level of distress after the intervention. The mean GHQ-12 score for family members at baseline was 5.83 (SD 3.29) and 4.00 (SD 3.73) at 12 weeks, and a paired sample t test revealed this to be significant (p