Constructing stability - a classic grounded theory of next-of-kin in palliative cancer care

Abstract

Background: Being next-of-kin to someone with cancer requiring palliative care involves a complex life situation. Changes in roles and relationships might occur and the next-of-kin thereby try to adapt by being involved in the ill person's experiences and care even though they can feel unprepared for the care they are expected to provide. Therefore, the aim of this study was to develop a classic grounded theory of next-of-kin in palliative cancer care. Method: Forty-two next-of-kin to persons with cancer in palliative phase or persons who had died from cancer were interviewed. Theoretical sampling was used during data collection. The data was analysed using classic Grounded Theory methodology to conceptualize patterns of human behaviour. Results: Constructing stability emerged as the pattern of behaviour through which next-of-kin deal with their main concern; struggling with helplessness. This helplessness includes an involuntary waiting for the inevitable. The waiting causes sadness and frustration, which in turn increases the helplessness. The theory involves; Shielding, Acknowledging the reality, Going all in, Putting up boundaries, Asking for help, and Planning for the inescapable. These strategies can be used separately or simultaneously and they can also overlap each other. There are several conditions that may impact the theory Constructing stability, which strategies are used, and what the outcomes might be. Some conditions that emerged in this theory are time, personal finances, attitudes from extended family and friends and availability of healthcare resources. Conclusions: The theory shows the complexities of being next-of-kin to someone receiving palliative care, while striving to construct stability. This theory can increase healthcare professionals' awareness of how next-of-kin struggle with helplessness and thus generates insight into how to support them in this struggle.

Availability and stability of palliative care for family members of terminally ill patients in an integrated model of health and social care

“…The patient-centric elements of the palliative care system in this study encompassed concern and care for patients, clean and comfortable environment, symptom control (such as pain, breathing difficulty, fidgetiness), and the ability and team-cooperation of the doctors, nurses and caregivers. The family-centric elements of the palliative care system included adjusting care to the evolving needs of patients’ families, including acknowledging and providing reassurance over the role as family member, assisting in navigating the healthcare system, acknowledging and exploring patient’s condition, providing information and advice, aiding in decision-making, maintaining continuity in nurse–family member relationships, monitoring family members’ well-being, listening, enabling the expression of emotions, offering bereavement support, and providing benefits [ 31 – 33 ]. These palliative care services were integral components of the study’s methodology, aimed at assessing the impact of palliative care on family members of terminally ill patients within an integrated institution for health and social care.…”

“…Higher sum scores indicate heavier family burden of diseases. Additionally, the CBI score was divided into low risk (0-24), medium risk (25)(26)(27)(28)(29)(30)(31)(32)(33)(34)(35)(36) requiring some intervention, and high risk (> 36) at brink of "burn out" [37][38][39]. Before palliative care, the total score was 18.86 ± 11.58 in FBSD and 51.84 ± 14.95 in CBI (Table 2, FBSD, CBI).…”