Next of Kin’s Experiences of Shame in End-of-Life Care

2020

Preprint

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.

Section: Methodsmentioning

confidence: 99%

Constructing Stability – A Classic Grounded Theory of Next-of-Kin in Palliative Cancer Care

2020

Preprint

“…When the core concept had emerged in the open coding phase, it was followed by the selective coding phase in which collected data and codes were defined into accurate concepts related to the core concept. A secondary analysis was done on 33 transcribed interviews, previously conducted with next-of-kin to patients who had died from cancer [11,12]. These persons were over 18 years old and 6 lived together with the ill persons, their relation were husbands (n=3), wives (n=17), cohabitees (n=3), sons (n=1) and daughters (n=9).…”

Section: Methodsmentioning

confidence: 99%

“…Nontheless, the next-of-kin can feel exposed in these situations and perceive that they are not 'up to the task', either in their own eyes or in the eyes of others [5]. This might evolve into feelings of guilt and/or shame [11,12]. Coming face-to-face with the forthcoming death can also result in bitterness towards losing a lot of what is important in life [13].…”

mentioning

confidence: 99%

Constructing Stability – A Classic Grounded Theory Of Next-Of-Kin In Palliative Cancer Care

2020

Preprint

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. Keywords cancer, constructing stability, grounded theory, next-of-kin, palliative care

“…Nontheless, the next-of-kin can feel exposed in these situations and perceive that they are not 'up to the task', either in their own eyes or in the eyes of others. This might evolve into feelings of guilt and/or shame [9,10]. Coming face-to-face with the forthcoming death can also result in bitterness towards losing a lot of what is important in life [11].…”

Section: Introductionmentioning

confidence: 99%

Constructing Stability – A Classic Grounded Theory Of Next-Of-Kin In Palliative Cancer Care

2019

Preprint

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. Keywords cancer, constructing stability, grounded theory, next-of-kin, palliative care