scholarly journals Protecting Family Interests: An Interview Study with Foreign-Born Parents Struggling On in Childhood Cancer Care

2012 ◽  
Vol 2012 ◽  
pp. 1-7 ◽  
Author(s):  
Pernilla Pergert ◽  
Solvig Ekblad ◽  
Olle Björk ◽  
Karin Enskär ◽  
Tom Andrews

Sweden's population is gradually changing to become more multiethnic and diverse and that applies also for recipients of health care, including childhood cancer care. A holistic view on the sick child in the context of its family has always been a cornerstone in childhood cancer care in Sweden. The purpose of this study was to gain knowledge about the experiences and main concern of foreign-born parents in the context of paediatric cancer care. Interviews were performed with eleven foreign-born parents and data were analysed using a classic grounded theory approach. Foreign-born parents often feel in a position of powerless dependence, but family interests are protected in their approaches to interaction with healthcare staff, through cooperation, contesting, and reluctant resigning. Healthcare staff need to listen to foreign-born parents and deal with their concerns seriously to prevent powerless-dependence and work for trustful cooperation in the common fight against childhood cancer.

2016 ◽  
Vol 23 ◽  
pp. 1-7 ◽  
Author(s):  
Pernilla Pergert ◽  
Solvig Ekblad ◽  
Olle Björk ◽  
Karin Enskär ◽  
Tom Andrews

2019 ◽  
Author(s):  
Marjo-Riitta Anttila ◽  
Anne Söderlund ◽  
Teemu Paajanen ◽  
Heikki Kivistö ◽  
Katja Kokko ◽  
...  

BACKGROUND Digital development has caused rehabilitation services and rehabilitees to become increasingly interested in using technology as part of rehabilitation. However, there is insufficient information available on the biopsychosocial differences between technology user groups. This study was based on our previous research that categorized four cardiac patient groups based on different experiences and attitudes towards technology (e-usage groups): “feeling outsider”, “being uninterested”, “reflecting benefit”, and “enthusiastic using”. OBJECTIVE This study aimed to identify differences in cardiac patients’ biopsychosocial profiles in e-usage groups and to deepen the understanding of these profiles in cardiac rehabilitation. METHODS Focus group interviews and measurements were conducted with 39 coronary artery disease patients aged 34−77 years (average 54.8 years; male 74%). Quantitative data were gathered during a 12-month rehabilitation period. First, we used analysis of variance and Tukey’s HSD test, a t-test or non-parametric tests, i.e., Mann-Whitney and Kruskal-Wallis tests, to compare the four e-usage groups in biopsychosocial measurements. Second, we compared the four e-groups’ results in terms of recommended and reference values. This analysis contained thirteen variables related to biomedical, psychological and social functioning. Finally, we formed biopsychosocial profiles based on meaning interpretation through the constant comparative analysis phase of classic grounded theory. RESULTS The biomedical variables were larger for waistline (p=0.031) and lower for physical fitness (p=0.029) in the “being uninterested” group than in the “enthusiastic using” group. The “feeling outsider” group had lower physical fitness (p=0.047) than the “enthusiastic using” group. For psychosocial variables, such as the degree of self-determination in exercise (p=0.023), the “being uninterested” group had lower values than the “enthusiastic using” group. Social variables such as performing guided tasks in the program (p=0.025) and communicating via messages (p=0.034) were lower in the “feeling outsider” group than in the “enthusiastic using” group. The recommended and reference values were lower than the cut-off values for waistline and physical fitness for the “feeling outsider” and “being uninterested” groups than for the “reflecting benefit” and “enthusiastic using” groups. Exercise self-efficacy was lower in the “enthusiastic using” group than in the “feeling outsider” group. The most essential result of the study was the formation of the “reflecting lifestyle management” category associated with different biopsychosocial profiles in remote rehabilitation. The “feeling outsider” and “being uninterested” groups had high-risk lifestyle behavior, and adherence to the Web-based program was low. In contrast, members of the “being uninterested” group were interested in tracking their physical activity. The “reflecting benefit” and “enthusiastic using” groups had low-risk lifestyle behavior and good adherence to Web-based interventions, but the “enthusiastic using” group had low self-efficacy in exercise. These profiles showed how individuals reflected their lifestyle risk factors differently in the rehabilitation process. We re-named the four groups “building self-awareness”, “increasing engagement”, “maintaining a healthy lifestyle balance” and “strengthening self-confidence”. CONCLUSIONS The results can facilitate more effective and meaningful personalization guidance and inform the remote rehabilitation counseling process. Cardiac rehabilitation professionals can tailor individual Web-based lifestyle risk management interventions by using these biopsychosocial profiles. According to the classic grounded theory approach, the study results will be used to generate substantive theory. CLINICALTRIAL ISRCTN Registry: ISRCTN61225589


2016 ◽  
Vol 17 (5) ◽  
pp. 554-570 ◽  
Author(s):  
James Nelson

Saturation remains a problematic concept within the field of qualitative research, particularly with regard to issues of definition and process. This article sets out some of the common problems with saturation and, with reference to one research study, assesses the value of adopting a range of ‘conceptual depth criteria’ to address problems of definition and process when seeking to establish saturation within a grounded theory approach. It is suggested that the criteria can act as a test to measure the progress of the theoretical sampling and thus ascertain the readiness of the research for the final analytical stages and theory building. Moreover, the application of ‘conceptual depth criteria’ provides the researcher with an evaluative framework and a tool for producing a structured evidence base to substantiate choices made during the theoretical sampling process.


2009 ◽  
Vol 16 (1) ◽  
pp. 43-56 ◽  
Author(s):  
Majda Pajnkihar

The aim of a previous study was to describe nursing in Slovenia generally, and to identify the most appropriate nursing model for that country. One specific finding was the issue of partner-like relationships; this article deals with that issue only. An interpretive paradigm and qualitative research design were used with a modified grounded theory approach. Interviews were carried out with selected nursing leaders ( n = 24) and other professionals ( n = 6) in order to draw on their knowledge and experience to describe the reality of nursing phenomena. The results of this research suggest that participants wish to use a theory that emphasizes clients and treats them as equal partners in nursing, promotes health, and rests on interpersonal relationships. The participants described the missing or obscure parts in nursing and their own beliefs and values about human beings and nursing. Descriptions of and the need for partner-like relationships, and the specific elements of such relationships, were of main concern. The participants argued that nurses need high quality and continuing education to ensure competent nursing practice. The indication is that Slovenia should move to graduate and undergraduate nurse education to foster expert reflective practice in order to abolish routinized care carried out in a hierarchical system.


2002 ◽  
Vol 65 (9) ◽  
pp. 413-419 ◽  
Author(s):  
Carrie A Britton ◽  
Ann Moore

This second article in a series of three presents some of the findings from a study involving 46 families of children with juvenile idiopathic arthritis (JIA). The aim of the study overall was to describe and explore what life was like for families that included a child with JIA in the United Kingdom today. The study deployed a grounded theory approach, collecting different sorts of data over time in order to build up a picture of how these families lived with such a changeable long-term condition. In the first stage, data were collected using a self-completion questionnaire from 46 families, whose children attended a regular outpatient appointment at the paediatric rheumatology clinic. These data formed the contextual landscape to further in-depth data collected in stage two, from a cohesive group of nine families of girls selected from those who had already taken part in stage one. In stage two, the families were interviewed in their own homes, the children wrote diaries and the families recorded a video diary. All the data related to the respondents' recollections of events and their thoughts, feelings and perspectives: they formed the insiders' view of the experiences. This article presents the findings about the common themes that emerged from the data about children with JIA and their siblings, mothers, fathers and grandparents. It also discusses the key elements of the families' experiences and concludes with recommendations for health care practitioners. A distillation of the views of the majority of parents is provided in these two statements by different mothers: ‘Immobility and pain makes the joy of play, just armchair viewing’ and ‘It's a stolen childhood, really, isn't it?’


2019 ◽  
Vol 4 (2) ◽  

One of the most daunting challenges faced in the health care delivery system is the complexity of cancer care, and the process of care coordination, a subcomponent of patient navigation. A study was undertaken to identify a central navigation process utilized by nurse practitioners practicing oncology. The data in this article is a component of a larger study entitled: The Process of Oncology Nurse Practitioner Patient Navigation: A Grounded Theory Approach. Utilizing a grounded theory approach N = 20 oncology nurse practitioners (ONP) were recruited. To be eligible for the study the ONP had to have a: 1) license to practice in their respective state; 2) certification to practice as an oncology nurse; 3) minimum of 5 years full time experience in oncology nursing; and 4) English speaking. The participants were recruited by: 1) word of mouth networking with peers: 2) Soliciting volunteers through public announcements at professional nursing conferences; 3) Contacting authors of oncology NP navigation articles or convention pamphlets via telephone or e-mail; 4) Posting information soliciting oncology NP volunteers on blogs or websites of professional organizations with organizational director approval; and, 5) Recruiting by snowball sampling. Telephone interviews were conducted utilizing an open-ended questionnaire. Data analysis and coding revealed the central navigation processes. The triage process was carried out in a variety of unique settings, and utilized in some instances within navigation subsystems. Key triage paths were identified along the cancer continuum; documenting the need for ONP navigators to strategically place these systems in areas along the cancer continuum, to expedite timely delivery of patient care. Literature search revealed that cancer specific triage tools are lacking. Implications for research and practice include the development of these tools for cancer care. Of critical importance is the need to identify service gaps in cancer care, and strategically place triage systems, to offset these service gaps. Practical application of the research findings in relationship to current literature is integrated for discussion.


2020 ◽  
Author(s):  
Carina Werkander Harstade ◽  
Anna Sandgren

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


2020 ◽  
Author(s):  
Carina Werkander Harstade ◽  
Anna Sandgren

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.


2018 ◽  
Vol 22 (3) ◽  
pp. 309-316
Author(s):  
Mary Hughes ◽  
Eileen Savage ◽  
Tom Andrews

This article presents moderating influences, one of the sub-core categories from the theory of accommodating interruptions. This theory emerged in the context of young people who have asthma, explaining how they develop behaviours in their everyday lives (Hughes 2014; Hughes et al., 2017). The aim of this research was to develop a theory on the behaviours of young people who have asthma, in relation to the impact of asthma on the lives and the issues affecting them. This research was undertaken using a classic grounded theory approach. Data were collected through in-depth interviews, participant diaries and clinic consultations with young people aged 11–16 years who had asthma for over one year. Moderating influence accounts for how social influences and social culture affect what young people who have asthma wish to achieve and how they want to be perceived by others. Young people moderate influences by their features or attributes in order to meet their own needs.


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