Exploring the Rationale, Experience and Impact of Using Cancer Information and Support

EXPLORING THE RATIONALE, EXPERIENCE AND IMPACT OF USING CANCER INFORMATION AND SUPPORT (CIS) SERVICES: AN INTERNATIONAL QUALITATIVE STUDY

Journal of Supportive Care in Cancer. Anna Boltong, Martin Ledwick, Kevin Babb, Clare Sutton, Anna Ugalde.

Corresponding author and person to whom requests should be addressed

Anna Boltong, PhD

Cancer Information and Support Service

Cancer Council Victoria

615 St Kilda Road, Melbourne, Victoria, Australia 3004

Phone: 03 9514 6323

Email:

Online Resource 1: Data Analysis Framework

Theme / Sub-theme / Definition / Examples of assigned data

Drivers for Access

Factors or conditions that prompted accessing a CIS; usually refers to gaps in information or a particular emotional state which can contribute to a sense of needing information or support to be able to ‘move on’ / Previous hospital experience / An interaction in the hospital system that leaves the patient with more questions about their situation or a sense that the immediate health care team cannot accommodate their needs; often due to inadequate time / I've only used the service I think a couple of times and the reason I used it was because, in my opinion, I didn't think that I could quite get the response I needed at the hospital. [UK 4, cancer patient].
Stunned and confused / A sense of not understanding what the cancer means for them either because they have too much information and seek clarity on 'trueness' or because the shock of diagnosis meant questions took some time to be formulated / I just didn't feel that we had the right connections; we hadn't been told what the process was. I sat there with a stunned mind, not knowing what to ask, what to do now. [AUS 4, wife].
Seeking answers / A need to seek clarification or perspective on information, an opinion or hunch already held / So that’s when I rang the CIS, because I was doing this research and finding stuff online and not being a medical expert, I’m not a fool, but being new to this particular area of it wanted to ask some questions like, “Why am I on Tamoxifen?”. I wanted some of those questions answered and I wanted someone to understand my fears really. [UK 10, cancer patient].
Lost / Not knowing what to do or where to go / We got sent home and it all sort of fell in a hole and we felt we hadn't been given appropriate support. I didn't know what to do, my husband's medication, I thought was not quite right, he was really agitated and that's when I made the call. Just to be told, there's nothing we can do, they didn't even give us the opportunity to say, can you explain why this, if there are any other alternatives, nothing. So I brought him home, and I was trying to keep myself strong and think about my husband, but I was falling apart at the seams. So I phoned and that was my question: 'I don't know what to do now'. [AUS 4, wife].
A specific practical need / A focused and informed intention for contacting the service with an intended outcome in mind / But I did actually call the line itself because I personally have ongoing chemotherapy and I was losing my hair and I was ringing about the wig services. [AUS 6, cancer patient].
No expectations / Not knowing what to expect; no agenda. Giving the service a try anyway on the off chance it could be beneficial in some way / I didn’t really know whether or not they could help me. I didn’t know what to expect when I rang, but I just needed to speak to someone. [AUS 2, sister].

Experience

What the service user was met with and what they came away with - the tangibles. / Questions answered / A caller’s perception of getting the right information at the right time. / That's actually what I required, and that's exactly what I got. [UK 1, Son].
Bonuses / Represents a sense of getting not only what the caller came for but also what they didn’t even know they needed. These are bonuses in information, support, education or expansion of support repertoire. A result of the nurses ability to ‘read between the lines’ to identify additional information and support needs but also their thorough approach of ‘no stone unturned’. This theme also speaks at the nurse’s role as navigator. / I knew that I could talk to a nurse and I rang up and she was extremely helpful and gave me some advice about stoma therapists for my mother. She also told me about other services. They gave me advice and the telephone number of the stoma nurse [at the hospital my mother was being transferred to] who to contact before my mother came there. They also gave me contacts about Palliative Care so I was able to get into contact with the local palliative care and then we talked through different things about advanced care planning. [AUS 7, daughter].
Sensitive and accommodating / Reference to the willingness of the nurses to listen, investigate queries and provide support, as well as to the sensitive and gentle manner in which queries were handled. / She didn't rush me off the phone. She took her time, she didn't make me feel any issue was unimportant, she was just wonderful. She could probably hear in my voice and in my questions that I was a nervous wreck. [USA 3, cancer patient].
Nurse as a therapeutic communicator and problem solver / Use of specific strategies to encourage the caller to express feelings and ideas so that the nurse may tailor information and support in a way that is salient to the caller’s situation and that conveys acceptance and respect. As in classic therapeutic communication, these strategies, which often drawer on the caller as joint problem solver, aim to enhance the patient’s comfort, safety, trust or health and well-being. / The CIS nurse just acknowledged my fears and worries and feelings of being angry with my family and some of my friends for the way they have unsupported or they haven’t understood or I've been told to be positive. I’ve just been able to vent that really. I realise that having this [cancer] it’s such a psychological situation that you've got to work through. [UK 6, cancer patient].
Expert knowledge / Expertise in the cancer care and systems in the widest sense but also breadth of knowledge of the whole repertoire of cancer information and support. / That was very comforting to know they had experience in the field, it was comforting to know that I was getting the right information [AUS 2, sister].
Context and orientation / Contextualising the cancer system and trajectory (to educate and normalise). Helping the callerunderstand their situation. / I talked about where he had the cancer, and the concerns we have about the treatment in Nigeria. The CIS nurse was able to give me some options about what treatments he could receive in the UK. [UK 5, daughter-in-law].
A safe open door / A place to come that is accessible when needed. Sometimes acts as a protected haven for difficult conversations. / It is nice I can ring them at night because that’s when I come up with the questions and need answers and that's when I call, and they've always been there to answer my questions and try their hardest to find things out you know. [USA 8, cancer patient].
An important and valued story / A place to feel heard where adequate airspace, time and recognition to the caller’sstory wasgiven. They felt understood. / It’s nice to know there is someone that you could talk to and they take interest in what you are going through and are able to explain what services you can go to. Just to assist you in whatever way they can. [AUS 8, cancer patient]
A trustworthy reliable service / Experienced as reliable information that the caller trusted was right for them / She introduced herself and explained that she was a nurse and straightaway that gave me confidence because if she was a volunteer then she would be the same as me, but it helped me feel secure. I put everything to her in a rambling way, I had two or three questions, and she held them, and answered them all in order, completely but also honestly. [UK 10, cancer patient].
Information overload / Information that was provided was deemed in excess of needs and this was experienced as unhelpful. / But to go to the website with information overload - at that time of my life it was just blurry streams of information and I just couldn't absorb it… It's just too much to absorb at that time in your life. [AUS 4, wife].

Impact

What the service or the interaction with the nurse resulted in or enabled. / Reducing worry or burden / Reassurance, often through normalising or meeting information needs. A sense of having a weight off their shoulders. / When she told me the facts it calmed me down. She gave me tips; she said it's normal; it's not something to get scared about. [USA 5, cancer patient]
The way she went about it, the way she explained it, I thought, that's not so bad after all. I just came to think, oh, I'm not going to die, and I felt really content. [AUS 1, cancer patient].
Preparing and informing family / A description of how interaction with the service empowers families to communicate with each other and with their healthcare team to better understand the impact of the cancer on their lives. / For example, I am meeting my family next week and my Mum at times has been, well, like it is all about her and not me. CIS has enabled me to say things to my mum in the right way. [UK 6, cancer patient].
Knowledge as power / People think that through the information they have obtained from CIS they may be able to engage in their own health or the health of friends and family in a more empowered way. They sometimes express that through this education gained, they may be treated differently in the health care system. / I went back more informed. It might not be that I needed to ask anything differently but whilst I was there they would know they were dealing with somebody who understands what they are doing and very often that can make for a very different interaction with the medical profession. [UK10, cancer patient].
It empowers you a little bit more because you're not going in there like a dummy and you've got something to say, a reasonable question to ask. [UK 1, son].
Confidence and competence / This picks up on constructs of both confidence AND competence to manage own health - usually due to a better understanding of, and engagement with, cancer and own situation or via the construction of questions to underpin more productive communication with the healthcare team. Confidence and competence is realised as the plugging of information gaps, improved health literacy, strategies for getting the most out of the healthcare team, making plans or changing the course of treatment. Reflects the callers ability to proactively take action to manage own health. / I hadn’t a clue when I was going in for my first appointment. I got told by my GP that I had cancer and was going in there to see the specialist. In their booklets and on their website, they've got questions to ask your doctor so that was really good because I had no idea, well what do I ask? What do I need to know? And where do I proceed from here? [AUS 3, cancer patient].
I have more knowledge about my cancer and what to expect with the doctors…I get more specific answers from the doctors, not generalised answers. [USA 8, cancer patient]
Extended support repertoire / People have more support options and are informed about how to better connect themselves with helpful supports or practical assistance. / I cannot get rides (to the hospital) from family all the time. It’s impossible; some of my appointments are real early in the morning, some of them in the afternoon. I have a few family that I do depend on but they're getting older and they're not well themselves. I get rides from CIS to the hospital for my appointments to do with cancer. So that’s one big help to me because otherwise I don’t know how I'd do it, I wouldn’t be able to do it really. Before I was taking cabs and it was $50 round trip so I knew I could not do that on a regular basis so they really helped me out tremendously with that and for that I'm thankful. [USA 10, cancer patient].

Adjunct to cancer treatment services (integration)

A clear categorisation of CIS outside of, but as a useful adjunct to, health services. A sense of interdependence where optimal benefit cannot be realised without the two sources of support being drawn on, integrated and respected / Positioning and integration / You can come to CIS for some things, and the hospital for others. A sense that drawing on the strengths of each option at the right time can optimise access to, and comprehension of health information. / At the end of the day I can get a great amount of information from the CIS but if my specialist is not ready to listen to what I've got to say, or not able to respond to what I've said (and I've sensed this already), then, I kind of capitulate on the health systems, or they don't value at all what I've been told by the CIS. So I hope there will be a chance in the next couple of months when I can actually use this information to have the same sort of relationship at my specialist hospital as with the CIS. [UK9, cancer patient]
CIS is for everyone / A legitimate or sometimes the only support & information access point for all people affected by cancer in the wider possible sense. / I’ve got a friend of that has contacted them a lot, like, to do with me. She hasn’t got breast cancer but she’s been a support to me, she was ringing them every week, sometimes twice a week and I think when I got this DVD with exercises on and information on surgery I really wanted to bury my head. But this woman would ring the CIS and tell them that I was on vitamins and should I be on that? She was always ringing them she was actually getting knowledge for herself but she’d also fill me in. [AUS 9, cancer patient].
Boundaries / Respecting professional and service boundaries; defining responsibilities of the CIS and others including hospitals and GPs. Scope of practice of each / The CIS can give me a nurse, an experienced nurse, an oncology nurse, and she'll answer my questions and if there's something [she can’t answer] she'll say, you know what, ask your doctor about that. [USA 5, cancer patient].
No appointment necessary / CIS as a point of access that the hospital does not offer in regards to i) outside of a treatment appointment context; ii) for the length of time desired; iii) at the time when the information or support is needed. This category also represents CIS as a gap filler - a place to go while waiting for the next stage of care / "I can't physically contact my doctors every time I have a question. Sometimes I feel as a cancer patient you will come up with questions, and you just want answers. I would like someone to answer my questions, and I cannot call my doctor then. [USA 5, cancer patient].