Young adults with kidney failure lived experiences of kidney replacement therapy decision-making.

BACKGROUND: Young adults living with kidney failure make decisions to select a kidney replacement therapy choice in partnership with healthcare professionals. However, little is known about how they experience kidney replacement therapy treatment decision-making and the impact this has on their well-being. OBJECTIVES: To explore young adults living with kidney failure experiences of treatment decision-making. The treatment decision-making investigated is about the choice of dialysis and/or kidney transplant options. DESIGN: A qualitative interpretive hermeneutic phenomenology study. PARTICIPANTS: Purposeful sampling was used to recruit young adults with kidney failure from social media, electronic media such as local kidney group websites and word of mouth. Semistructured interviews were conducted with (n = 18) participants aged 18-30 years. APPROACH: Inductive analysis of the data were performed using Braun and Clarke's thematic analysis framework. FINDINGS: The five themes generated were (1) awareness and anticipation of future kidney replacement therapy decision; (2) health information and education; (3) engaging in decision-making, support and choices; (4) implementation of kidney replacement therapy and transitioning into the new normal life and (5) the impact of decision-making and choice on well-being. CONCLUSIONS: Decision-making significantly affected young adults' psychosocial and mental well-being. Young adults had unmet informational and decisional needs and struggled to cope due to lack of support. A four-talk model, with an implement talk phase added to the existing three-talk (team talk, option talk, decision talk) shared decision-making model, would promote a focus on the implementation of choice and support the transitioning from previous life to long-term dependence on treatment.

Decision-making experiences of young adults with long-term conditions.

BACKGROUND: Young adults with long-term conditions can struggle to accept their diagnosis and can become overwhelmed with managing their condition. Suboptimal transfer from paediatric to adult services with a resultant disengagement with the service can result in less involvement in care and decision-making. Shared decision-making can improve involvement in health decisions and increase satisfaction with treatment/therapy and care. OBJECTIVES: An integrative literature review was conducted to explore and understand young adults' experiences of decision-making in health care. DESIGN: An integrative literature review. DATA SOURCES: CINAHL, EMCARE, PsycINFO, HMIC, EMBASE, Web of Science, PubMed, MEDLINE, EBSCOHOST and COCHRANE databases were searched for relevant literature published between January 1999 and January 2020. FINDINGS: Thirteen primary research papers met the inclusion criteria. Four main themes were identified: (1) Information delivery and communication; (2) participation in decision-making; (3) social factors influencing decision-making and (4) emotional impact of decision-making. CONCLUSIONS: Young adults with long-term conditions have specific decision-making needs which can impact their emotional health. Research with a specific focus on young adults' experiences of decision-making in health care is needed.