Haematological cancer patients: achieving a sense of empowerment by use of strategies to control illness

Bulsara, Caroline; Ward, Alison; Joske, David

doi:10.1046/j.1365-2702.2003.00886.x

Cited by 64 publications

(74 citation statements)

References 19 publications

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“…Patient empowerment is described as a state of mind in which individuals or groups gain control over certain aspects of their lives by initiating an active, participatory role Bulsara et al, 2004). It is also a shift in healthcare professionals' attitude from feeling responsible for the patient to feeling responsible to the patient.…”

Section: Patient Empowermentmentioning

confidence: 99%

Patient involvement and service innovation in healthcare

Engström¹

2014

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This thesis adds to a stream of research suggesting that healthcare can be more patient centered and efficient by redefining the role of the patient from a passive receiver to a more active and collaborative participant. This may relate to healthcare provision (Anderson and Funnell, 2005;Berry and Bendapudi, 2007;Bitner and Brown, 2008;McColl-Kennedy et al., 2012;Nordgren, 2008) and innovation (Bate and Robert, 2006;Groene et al., 2009;Longtin et al., 2010). Through research initiative containing four healthcare units and 68 patients, the present thesis combines healthcare research (e.g., Anderson and Funnell, 2005;Nelson et al., 2002) with service research (e.g., Grönroos, 2006; Lusch, 2008, 2004) to explore three aspects of patient involvement and service innovation.Firstly, the concept of patient involvement itself is investigated through an extensive literature review of empirical research on patient involvement. A model describing the antecedents, forms and consequences of patient involvement is proposed. What value is, and how patients can co-create value is discussed from the perspectives of healthcare research and service management thought.Secondly, the thesis proposes a diary-based methodology for involving patients in service innovation. My colleagues and I developed the methodology in collaboration with the participating care providers and applied it in practice. We used the experiences we gained from the project and the contributions from the patients to examine the opportunities for user involvement in service innovation. The participants contributed with ideas and insights stemming from their experiences in their contact with healthcare and other resources. We suggest the following three ways of learning from the collected data: As ideas for improvements; through summary reports to illustrate other quantitative data; and as narratives to promote change. Thirdly, the thesis explores patients' motivations to participate in service innovation, a hitherto unexplored field. Through an analysis of patients' contributions and interviews with participants we found that there are a number of factors that motivate patients to participate and that participation is perceived as a social-and meaning-laden event. Patients derive psychological well-being and support from participation, but disease was sometimes a barrier to participation. This thesis elaborates on how the most motivated users can be involved in service innovation, applying thinking from the lead-user methodology to a healthcare setting.Overall, the thesis explores patient involvement from new perspectives and, by doing so, adds to our collective efforts to improve healthcare. viii Key words: Patient Involvement, participation, co-creation, patient empowerment, user involvement, patient centered care, motivation, user experiences, co-creation, service development, service innovation, service design, health care, lead users, diary, value ix SAMMANFATTNING Denna avhandling syftar till en mer patientcentrerad och effektiv sjukvård. Den bid...

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Section: Patient Empowermentmentioning

confidence: 99%

Patient involvement and service innovation in healthcare

Engström¹

2014

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“…Clinicians could examine scores on individual items or subsets of items and use these to suggest strategies to help patients adapt to their illness. Since patients' positive attitudes towards support systems and resources impacts (Bulsara et al, 2004;Knott, Turnbull, Olver, & Winefield, 2012) on their ability and motivation to gain a measure of control, it is useful for clinicians to be aware of levels of perceived empowerment in patients. This is in line with the general aim of psycho-oncological interventions to help patients develop and maintain a sense of control over the disease (Holland, 2002;Oh PJ & Kim SH, 2010).…”

Section: Discussionmentioning

confidence: 99%

“…Patients with high levels of empowerment achieve a level of control through adapting lifestyles and taking advantage of a range of supports. In spite of anxious times during the illness (Degner, 1998;Dyson et al, 2012;Merckaert et al, 2010), patients who spoke of being able to control the management of their treatment and illness side effects (Bulsara et al, 2004) felt more in control of the experience. Thus, empowerment impacts in a positive way on how patients react to setbacks (Patterson et al, 2002;Kyngas & Rissanen, 2001).…”

Section: Discussionmentioning

confidence: 99%

“…Twenty-eight items were generated from a review of literature and the main themes from twelve Haematology Clinic Shared Care cancer patient interviews pertaining to management of their illness (Bulsara et al, 2004). The extensive literature review was carried out in the area of motivation and self-efficacy to identify markers for decision-making preferences and patient empowerment to guide the development of interview questions.…”

Section: Initial Pilot Studymentioning

confidence: 99%

“…Previous work has shown quality of life to be improved by increased involvement in decision-making regarding management of illness, and the use of strategies to enable patients feel they were in control. These two aspects seem to be fundamental to empowerment (Bulsara et al, 2004;Wu, Chin, Haase, & Chen, 2009). Thus empowerment incorporates the way patients seek to optimise outcomes of treatment (Taylor, Litcheman, & Wood, 1984;Golant, Altman, & Martin, 2003).…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Development of a Cancer Related Patient Empowerment Scale Using the Polytomous Rasch Measurement Model

Bulsara¹,

Styles²

2013

CCO

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Aims and objectives: A scale to measure empowerment amongst cancer patients was developed in order to understand and quantify empowerment amongst cancer patients. Background: Within the field of cancer research, understanding the ways in which cancer patients gain control over their illness can be an important factor in helping patients reduce anxiety and maintain a reasonable quality of life. Design: The Patient Empowerment Scale was developed from a set of markers identified from the literature on empowerment and self-efficacy and from interviews with patients. Methods: The Polytomous Rasch Measurement Model was selected as the most appropriate means of examining the psychometric properties of the scale items, and of investigating how cancer patient respondents interacted with each statement. Results: Items from the initial 28-item scale were refined using the results from the Rasch analysis to form the final 15-item scale. The Person Separation Index of 0.78 indicated an acceptable degree of reliability. Conclusion: The results indicate the scale has acceptable psychometric properties which may be enhanced by the development of more intense items to better measure patients with high levels of empowerment and thereby increase the reliability of their measures.

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Eliciting the views of left breast cancer patients' receiving deep inspiration breath hold radiation therapy to inform the design of multimedia education and improve patient‐centred care for prospective patients

Dower,

Halkett,

Dhillon

et al. 2024

J of Medical Radiation Sci

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IntroductionThe currently accepted best practice radiation treatment for left breast cancer patients is Deep Inspiration Breath Hold (DIBH) where patients hold a deep breath to reduce late cardiac and pulmonary effects from treatment. DIBH can be challenging and induce or exacerbate anxiety in patients due to the perceived pressure to reduce radiation treatment side effects. This study explored the experiences of patients treated with Deep Inspiration Breath Hold Radiation Therapy (DIBH‐RT) to improve patient‐centred care and inform the design of multimedia educational tools for future patients undergoing DIBH.MethodsThis descriptive qualitative study was underpinned by a social constructivist approach to create new educational and patient care approaches based on previous patients' experiences. Semi‐structured interviews were conducted with patients who had completed DIBH‐RT for breast cancer. Data was analysed with reflexive thematical analysis.ResultsTwenty‐two patients were interviewed with five key themes identified: (1) informational needs, (2) care needs, (3) autonomy, (4) DIBH performance influencers and (5) other centredness. Recommendations were derived from these themes to improve future treatments of DIBH patients. These recommendations revolved around improvements to education, patient‐centred care and strategies to improve self‐efficacy with breath holding.ConclusionPatients offer a wealth of knowledge regarding their lived experiences with treatment which can enhance future patients' experiences if incorporated into their education and care. Eliciting patients' views of their DIBH‐RT treatment highlighted the need to improve patient self‐efficacy with DIBH through familiarity with their planned treatment from new multimedia education, and foster patient care to enhance their experience.

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Haematological cancer patients: achieving a sense of empowerment by use of strategies to control illness

Cited by 64 publications

References 19 publications

Patient involvement and service innovation in healthcare

Patient involvement and service innovation in healthcare

Development of a Cancer Related Patient Empowerment Scale Using the Polytomous Rasch Measurement Model

Eliciting the views of left breast cancer patients' receiving deep inspiration breath hold radiation therapy to inform the design of multimedia education and improve patient‐centred care for prospective patients

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