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Perspectives on life participation by young adults with chronic kidney disease: an interview study.

ABSTRACT: OBJECTIVE:To describe the perspectives on life participation by young adults with childhood-onset chronic kidney disease (CKD). DESIGN:Semi-structured interviews; thematic analysis. SETTING:Multiple centres across six countries (Australia, Canada, India, UK, USA and New Zealand). PARTICIPANTS:Thirty young adults aged 18 to 35 years diagnosed with CKD during childhood. RESULTS:We identified six themes: struggling with daily restrictions (debilitating symptoms and side effects, giving up valued activities, impossible to attend school and work, trapped in a medicalised life, overprotected by adults and cautious to avoid health risks); lagging and falling behind (delayed independence, failing to keep up with peers and socially inept); defeated and hopeless (incapacitated by worry, an uncertain and bleak future, unworthy of relationships and low self-esteem and shame); reorienting plans and goals (focussing on the day-to-day, planning parenthood and forward and flexible planning); immersing oneself in normal activities (refusing to miss out, finding enjoyment, determined to do what peers do and being present at social events); and striving to reach potential and seizing opportunities (encouragement from others, motivated by the illness, establishing new career goals and grateful for opportunities). CONCLUSIONS:Young adults encounter lifestyle limitations and missed school and social opportunities as a consequence of developing CKD during childhood and as a consequence lack confidence and social skills, are uncertain of the future, and feel vulnerable. Some re-adjust their goals and become more determined to participate in 'normal' activities to avoid missing out. Strategies are needed to improve life participation in young adult 'graduates' of childhood CKD and thereby strengthen their mental and social well-being and enhance their overall health.

SUBMITTER: Kerklaan J

PROVIDER: S-EPMC7569939 | biostudies-literature | 2020 Oct

REPOSITORIES: biostudies-literature

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Perspectives on life participation by young adults with chronic kidney disease: an interview study.

Kerklaan Jasmijn J Hannan Elyssa E Hanson Camilla C Guha Chandana C Cho Yeoungjee Y Christian Martin M Hamiwka Lorraine L Ryan Jessica J Sinha Aditi A Wong Germaine G Craig Jonathan J Groothoff Jaap J Tong Allison A

BMJ open 20201016 10

<h4>Objective</h4>To describe the perspectives on life participation by young adults with childhood-onset chronic kidney disease (CKD).<h4>Design</h4>Semi-structured interviews; thematic analysis.<h4>Setting</h4>Multiple centres across six countries (Australia, Canada, India, UK, USA and New Zealand).<h4>Participants</h4>Thirty young adults aged 18 to 35 years diagnosed with CKD during childhood.<h4>Results</h4>We identified six themes: struggling with daily restrictions (debilitating symptoms a ...[more]

PMID: 33067282

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Project description:BackgroundQualitative patient interviews and patient-reported outcome instruments are important tools to understand the patient experience of disease. The aim of this study was to use patient interviews to identify concepts relevant and important to patients living with chronic kidney disease (CKD) stages 2-3b, develop a comprehensive conceptual model of the patient experience and debrief the Kidney Disease Quality of Life 36-item instrument (KDQOL-36) for patients with CKD stages 2-3b.MethodsConcept elicitation interviews were conducted with patients with CKD stages 2-3b to identify signs/symptoms and impacts most relevant and important to patients (i.e., 'salient' concepts) and develop a conceptual model for the disease. Based on the salient concepts identified in the interviews, new items were proposed to supplement the KDQOL-36. Cognitive debriefing was performed to evaluate the KDQOL-36 and the additional items.ResultsA total of 31 patients were interviewed in this study (22 for concept elicitation and 15 for cognitive debriefing). The interviews identified 56 concepts (33 signs/symptoms and 23 impacts), 17 of which had not been identified in a previous literature review. Four signs/symptoms ('fatigue/lack of energy/tiredness', 'sleep problems', 'increased urination [including nocturia]' and 'swelling in legs/ankles/feet') and two impacts ('anxiety/worry' and 'general negative emotional/mental impact') were identified as salient. Of the salient signs/symptoms, three were not covered by the KDQOL-36 (sleep problems, increased urination and swelling in legs/ankles/feet) and were represented during cognitive debriefing interviews through four additional items (trouble falling asleep, trouble staying asleep, increased urination [including nocturia] and swelling in legs/ankles/feet) generated in the style of the KDQOL-36. All patients found the KDQOL-36 plus the four additional items relevant, and the majority found them clear.ConclusionsBy identifying previously unknown concepts and augmenting the understanding of which are most important to patients, a comprehensive conceptual model was developed for patients who have CKD stages 2-3b. This study also demonstrates the suitability of the KDQOL-36 for patients who have CKD stages 2-3b and provides suggestions for how the instrument could be further developed to more comprehensively capture patient experience.

Project description:BackgroundProblems with mobility, functioning and social participation make living independently difficult for frail older adults. To continue living independently, therapy adherence is a prerequisite. The causes for non-adherence among older adults are multiple and complex, which is why insight into older adults' perspectives regarding their functioning is an essential factor to increase therapy adherence. This study investigates the perspectives of older adults on their functioning, social participation and health, and the factors influencing these elements.MethodsWe conducted a qualitative study on the older adult's perceived functioning, social participation and health. Fourteen home-dwelling older adults suffering from chronic health issues were purposively selected. Semi-structured interviews were conducted with open-ended questions. Data were analysed following the Basic Logical Model of Abduction and Creswell's coding method.ResultsAssistive devices, the older adult's dwelling and living environment, professional and informal support, and medication are perceived as important determinants for retaining functioning and social participation. Attitude, social influence and personal effectiveness were found to influence whether a person performs or participates in an activity. A person's attitude is related to the significance the activity has to that person, the activity's importance, personal wellbeing, the person's values, and their desire for autonomy. Peers and children have a social influence on the level of activity of the older person. Traditions, in particular religious activities, along with personal effectiveness are motivating factors determining whether a person performs or participates in an activity. Personal effectiveness is linked to the person's belief in their personal competencies and to the relationship between effort and result. Finally, it appears that the type of coping strategy the older adult adopts, has an influence on their behavior. The participating older adults often used remarkable problem-focused strategies, which had a positive effect on their level of autonomy.ConclusionsOlder adults have identified barriers and facilitators that influence their level of functioning and social participation. These findings help to create a framework for maintaining and increasing therapy adherence, which may be helpful in facilitating occupational therapists and other healthcare professionals to detect determinants of therapy adherence.

Project description:BackgroundBreast cancer is the most common cancer type among women globally. To facilitate early detection, all 40-74-year-old female residents of Sweden are invited to participate in a population-based mammographic screening programme. Approximately 20% of all invited women decline the offer, and if this is due to systematic differences that can be adjusted, it can indicate inequity in healthcare. Assessment of and being updated about the health and healthcare of the residents are largely the responsibilities of the self-governed regions in Sweden. The understanding of the residents' health serves as a basis for decision making and priority setting. This study aims to describe how politicians representing a region in Sweden perceive women's participation in mammographic screening and the politicians' own possibility to promote such participation.MethodsQualitative thematic analysis was conducted on the data obtained from individual semi-structured interviews held in 2019. The interviewees comprised ten politicians (six women and four men, 38-71 years old) representing a sub-committee focusing on public health and healthcare issues.ResultsTwo main themes have been identified: 1) expected actions and 2) expected conditions for acting, including a total of four sub-themes. According to the politicians, the expected actions, such as obtaining information and being updated about matters regarding mammographic screening, concern both the women invited to the screening and the politicians themselves. Additionally, for both the individual and the healthcare organisation, here represented by the politicians, expected actions entail a shared commitment to maintain health. The expected conditions for acting refer to the politician's awareness of the factors influencing the women's decision to undergo or refuse the screening and having the resources to enable taking actions to facilitate participation.ConclusionsExpected actions and expected conditions for acting are tightly connected and entail some form of prioritisation by the politicians. Setting the priorities can be based on information about the purpose of the screening and an understanding of social determinants' impacts on women's decision to refrain from mammographic screening, as well as available resources.

Dataset Information

Perspectives on life participation by young adults with chronic kidney disease: an interview study.

Publications

Perspectives on life participation by young adults with chronic kidney disease: an interview study.

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