Living on Hold in Palliative Cancer Care

Anna Sandgren, RN, M.Sc.N., Ph.D. Student; Hans Thulesius, MD, Ph.D.; Kerstin Petersson, RNT, Ph.D.; and, Bengt Fridlund, RNT, Ph.D. Abstract The aim of this study was to develop a classic grounded theory of palliative cancer patients and their relatives in the context of home care. We analyzed interviews and data related to the behaviour of both patients and relatives. “Living on hold” emerged as the pattern of behaviour through which the patients and relatives deal with their main concern, being put on hold. Living on Hold involves three modes: Fighting, Adjusting and Surrendering. Mode being may change during a trajectory depending on many different factors. There are also different triggers that can start a reconciling process leading to a change of mode. This means that patients and relatives can either be in the same mode or in different modes simultaneously. More or less synchronous modes may lead to problems and conflicts within the family, or with the health professionals. Keywords: adjusting mode, fighting mode, grounded theory, palliative care, surrendering mode Introduction Receiving a cancer diagnosis requires emotional and physical adaptation to a new situation (Flanagan & Holmes, 2000) and when the cancer is incurable, both patients and relatives may confront a life crisis (Kristjanson & White, 2002). Powerlessness and helplessness are common feelings among dying patients (Sand, Strang, & Milberg, 2008), but at the same time they can experience hope and quality of life (Melin-Johansson, Odling, Axelsson, & Danielson, 2008). Patients want to be treated as persons not as diseases (Wenrich, Curtis, Ambrozy, Carline, Shannon, & Ramsey, 2003) and cancer patients want palliative care to be based on safety, participation and trust (Harstade & Andershed, 2004). Adequate information and support in the early phases of treatment is thus important and can better fulfil future needs, render increased trust, and provide confidence throughout the course of the disease (Kristjanson & White, 2002). The patient’s cancer disease also changes the situation of their relatives (Stajduhar, 2003), who may be emotionally overwhelmed by unprocessed emotions (Thomas, Morris, & Harman, 2002). If dying patients are to be cared for at home the well-being of their relatives is crucial (Ramirez, Addington-Hall, & Richards, 1998), and their commitment is often seen as a condition for good home care (Mok, Chan, Chan, & Yeung, 2003). Yet, relatives living nearby are not a necessity for providing quality palliative care (Gyllenhammar, et al., 2003). When patients and relatives are in different phases of their processing of overwhelming emotions, it can be difficult for health professionals to understand their emotional reactions (Fox, 1995). There can also be a mismatch of perceptions as to what is important between patients, relatives and professionals (O’Baugh, Wilkes, Luke, & George, 2003; Widmark-Petersson, von Essen, & Sjoden, 2000). In order to offer support at the right care level, health professionals need a better knowledge of the patients’ and relatives’ situation in palliative cancer care (McIllmurray, et al., 2001). In the last decades there has been a shift in the place of dying and more people die in their own homes (Burge, Lawson, & Johnston, 2003; Socialstyrelsen, 2006), which increases the demand for home care (Fürst, 2000). Studies on patients’ and relatives’ situation in palliative care have mostly been conducted in hospice and advanced palliative care settings, but there is a lack of studies from acute care and basic home care settings, and a considerable lack of explanatory theories of how patients and relatives handle their situation in home care. The aim in the present...

The Coding Process and Its Challenges

Much of this paper is extracted from Holton, J. A. (2007). The coding process and its challenges. In A. Bryant, & K. Charmaz (Eds.), The Sage handbook of grounded theory. (pp. 265-289). Thousand Oaks, CA: Sage. Judith A. Holton, Ph.D. Abstract Coding is the core process in classic grounded theory methodology. It is through coding that the conceptual abstraction of data and its reintegration as theory takes place. There are two types of coding in a classic grounded theory study: substantive coding, which includes both open and selective coding procedures, and theoretical coding. In substantive coding, the researcher works with the data directly, fracturing and analysing it, initially through open coding for the emergence of a core category and related concepts and then subsequently through theoretical sampling and selective coding of data to theoretically saturate the core and related concepts. Theoretical saturation is achieved through constant comparison of incidents (indicators) in the data to elicit the properties and dimensions of each category (code). This constant comparing of incidents continues until the process yields the interchangeability of indicators, meaning that no new properties or dimensions are emerging from continued coding and comparison. At this point, the concepts have achieved theoretical saturation and the theorist shifts attention to exploring the emergent fit of potential theoretical codes that enable the conceptual integration of the core and related concepts to produce hypotheses that account for relationships between the concepts thereby explaining the latent pattern of social behaviour that forms the basis of the emergent theory. The coding of data in grounded theory occurs in conjunction with analysis through a process of conceptual memoing, capturing the theorist’s ideation of the emerging theory. Memoing occurs initially at the substantive coding level and proceeds to higher levels of conceptual abstraction as coding proceeds to theoretical saturation and the theorist begins to explore conceptual reintegration through theoretical coding. Key words: classic grounded theory, coding, conceptualization, memoing, preconception Introduction There are a number of coding challenges that may confront those undertaking a grounded theory study. Among the most common challenges are those of preconceiving the study through the import of some standard qualitative research requirements, raising the focus of coding and analysis from the descriptive to the conceptual level and trusting one’s intuitive sense of the conceptualization process to allow a core category to emerge, then being comfortable to delimit data collection and coding to just the core concept and those concepts that relate to the core. Those inexperienced in grounded theory methodology may worry about missing something when they leave the rest of the data behind but it is important to remember that grounded theory is about concepts that emerge from data, not the data per se. A fourth major challenge for many is the use of theoretical codes. Many who attempt grounded theory are captured by the energy of conceptual emergence at the substantive level and settle for a few good concepts but do not sustain the discipline and patience to systematically integrate those concepts through theoretical coding. This task is made more difficult if they have neglected the important process of memoing in conjunction with coding and analysis. Developing one’s skills as a grounded theorist takes practice; the method is best learned by cycling through the various procedures learning from each attempt and developing clarity and confidence in their application. This paper will explore each of the aspects and challenges of coding as outlined above. I have illustrated various aspects of coding by offering the...