Those owners categorized as within the early stage were interviewed during one of the first two appointments for the treatment program; those in the middle stage were at the mid-point of the expected duration of the treatment program; and those in the late stage were in the last two visits of their treatment program. Ten interviews duration, 1 h regarding 10 dogs were undertaken for each treatment stage.
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Seventeen interviews were conducted with the primary caregiver individually and 13 with the primary caregiver and 1 other family member 9 husband-wife and 4 mother-daughter dyads. At the time of the interview, the primary caregiver for each dog completed a short demographic form and a widely used questionnaire with established psychometric properties for measuring the human-animal bond The LAPS provides a score that indicates the category of attachment of the owner to the pet as follows: score of The mean age of the dogs was 8.
Each dog had one of various life-limiting cancers, including multicentric lymphoma, appendicular osteosarcoma, high grade mast cell tumor, and hemangiosarcoma, among others. Semi-structured single and dyadic interviews were conducted to identify clients' expectations of the oncology care service. Interviews followed standardized open- and closed-ended questions as contained within 1 of 2 interview guides, the details of which have been previously described 42 , One interview guide was for use among early-stage clients, and the other interview guide was for use among middle- and late-stage clients.
An intentionally curious, dispassionate, and nonpartisan interview stance was taken throughout the interviews. Interviews were collected by use of an audio recorder 47 and computer program 48 , and transcribed verbatim by a professional transcriptionist and reviewed by the principal author DLS to ensure quality and accuracy. Inaudible, implied, or tense-adjusted words were square bracketed, and the names of clients, patients, and oncology service providers were replaced with curly bracketed non-identifying descriptors for the purposes of data reporting.
Thematic analysis 49 , was performed group wise by the stage of the treatment to identify, analyze, and report the primary patterns or themes across the data. To start, interesting features of the data were coded to generate a listing of codes supported by data extracts. The codes were then sorted into subthemes, resulting in a collation of the relevant data extracts within each subtheme. Related subthemes were drawn together via mapping to create main themes.
The interrelationships between these themes were then defined and described. As thematic analysis is a recursive rather than linear process, involving back and forth movement between the phases of analysis 49 , this process required multiple passes through each transcript, between transcripts, and between the 3 stages of transcripts, looking for similarities and differences.
The coding was consistently performed by the primary author DLS and reviewed periodically with comparison coding with co-authors. Likewise, the process of theme generation and mapping was reviewed with the coauthors. Across the dataset, expressions of uncertainty were coded to create a list of distinctly identifiable forms concepts of uncertainty. Because the data generated consisted of words rather than numbers, the findings are reported as descriptive summaries with general frequency patterns.
For reporting purposes, words in quotations are verbatim from the participants, and italics are used as a form of speech emphasis. Prior to the diagnosis, life in relation to their dog was lived following customary, taken-for-granted daily routines.
For some, the clinical signs were imperceptible, with an incidental finding on examination or an acute hemorrhagic crisis as the first indication of threat. For others, the clinical signs were subtle, ill-defined, or vague, such as the gradual onset of lethargy or weight loss. Why us? Fifty-three content-distinct forms of uncertainty were identified Table 1.
Living in a world of uncertainty strongly influenced participants' feelings, thoughts, behaviors, attitudes, and personal expectations, all of which impacted their lived experience, and thus, their ability to cope with, and adapt to, the realities of the cancer situation. Most participants were uninformed or misinformed about cancer and cancer treatment in dogs at the time of the diagnosis. Probably if we had known it was lymphoma, we would have let her die, because we wouldn't have known what we know now—the potential to give her chemo and it's not too toxic… and give her some reasonable lifespan.
Participants' first source of information was usually the primary care clinician. A few, however, expressed concerns about both the quality of the information given and their clinician's hesitancy to refer. There was evidence to suggest that a few referring veterinarians may have had inadequate knowledge about the specific cancer, its treatment, or both, were not aware of what speciality oncology services could offer, did not consider treatment or referral worthwhile, and were only referring out of pressure from their client.
One client recalled her experience as follows:.
So I'm not sure if every vet really makes the owners aware of what options are out there for their animals. Do they evaluate whether the couple would be willing to spend the money? I don't know what goes on in their decision-making, but I don't think the services are as well-known as perhaps they could be. They obviously knew that I wasn't willing to give up without giving her every possible chance. I'm wondering, why didn't they refer me to OVC? Why was it me having to keep fighting for her, pursuing it, that finally we came here? Another client shared how her practitioner's attitude changed.
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The degree to which primary care practitioners informed and thus prepared participants for their referral visit to the oncology service ranged from a minimalist assurance to an accurate and precise account of what they might expect from the referral service. Just go there. They know you're coming and they'll take care of you.
I was prepared even before I came for hearing about the fact that they would do diagnostic testing and they would want to do ultrasound and they would need bloodwork and possibly more x-rays. So my home vet had prepared me for all [that]… So I came here knowing. And cost, too. She actually asked about those kinds of things.
So my home vet actually laid a lot of the groundwork for what I was to find out here. So nothing was a surprise… She finds it important to know that you know what's going on, so she gives you lots of information.
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I think that's important, what you get at home to prepare you for coming here. The majority of participants had been, at most, minimally informed about what to expect at the oncology center. The search for information extended beyond the examination room, often in the form of conflicting, changeable, and exhaustive conversations with family members as they tried to make sense of the bad news. This client-driven independent research was powerful enough to not just gain an understanding of the cancer and its treatment options, but also directly influence the decision as to whether or not to pursue treatment.
Some participants' research was quite in-depth, involving looking up specific treatment protocols, side-effects and associated life expectancies. Other research centered on adjunctive support measures such as nutritional options anti-oxidant diets, nutritional supplements , alternative approaches naturopathy , and harm reduction methods green disinfectants, natural candles, no perfumes. It was clearly evident that all participants closely attended to others in the waiting room, zeroing in on the surrounding activities and one another's conversations, as well as engaging in mutual dialogue, all the while making internal comparisons in the effort to learn as much as possible.
As was repeatedly evident in the participants' descriptions of their lifestyle and their perceptions of their dog's welfare, it was clear that they were closely monitoring their dogs. What made the task challenging, compounding the uncertainty experienced, was that many patients exhibited minimal to no overt cancer-related illness or evidence of cancer, and tolerated treatment, such as chemotherapy, with little or only transitory treatment-related illness.
For many clients, the patients' cancer was imperceptible and thus difficult to gauge in the effort to maintain an accurate perspective of the situation. Thus, even with close vigilance, many participants found themselves perplexed. The lack of clear-cut, concrete, observable evidence made it difficult for them to truly gauge their dog's cancer status or monitor disease progression. It made it difficult for them to distinguish between the clinical signs of cancer, side-effects of treatment, and other conditions, such as the onset of an illness or a natural age-related developmental change such as arthritis, lower energy or increased sleeping, especially when the signs were so subtle they could suggest any number of possibilities.
Within subtlety, some clients even began to question normal behaviors, second-guessing the range of what was previously considered normal for their dog. Just a few participants demonstrated overt evidence of these emotion-focused coping strategies, based on analysis of single interviews and not purposely screening for this during the interviews.
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Note that clients' distinct efforts to avoid specific aspects of their informational realities did not necessarily preclude specific information-seeking activities, such as the continuous monitoring of their dog's quality of life especially since this was the foremost qualification in engaging in and continuing care.
The two approaches to coping were not mutually exclusive. You pretend he's not sick, because hemangiosarcoma is the type of cancer where, when he's not doing chemo, you can pretend he's not sick, cause you don't see it and it doesn't make him sick… We pretend, and we do it every day… You live in denial, but prepare for the worst. For others, the invisibility risked the erroneous conclusion that the situation was stable, even when they had been advised otherwise.
And when that [bleed] happened, it was just like a slap, a big slap—wake-up call. For me, that meant distinguishing between the knowable and the unknowable. Things that were knowable included: What treatments are available?
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How are they intended to help? What are the potential risks? Things that were unknowable included: Would this treatment work? For how long? At what cost?
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With that distinction, my goals came into sharper focus. I needed to listen to my son, and to support him where he was. I needed to hear what was most important to him. Sometimes we most definitely did not agree. Determined to maintain his autonomy even as his illness accelerated with multiple hospitalizations, Robby insisted on remaining at college in a city two hours from home. At that moment, there was nothing I wanted more than to bundle him up and bring him home, but there really was nothing I could do differently for him at home. Eventually, it influenced inspired-action to write my book, HeartBroke.