Being heard – Supporting person‐centred communication in paediatric care using augmentative and alternative communication as universal design: A position paper

Thunberg, Gunilla; Johnson, Ensa; Bornman, Juan; Öhlén, Joakim; Nilsson, Stefan

doi:10.1111/nin.12426

Cited by 22 publications

(39 citation statements)

References 50 publications

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“…In this study, a person-centered approach was adapted to pediatric care, which emphasizes the purpose of accessing the child’s stories [ 34 ]. The goal of such an approach is to empower the child to become more independent in their own care.…”

Section: Discussionmentioning

confidence: 99%

“…Three different approaches to centeredness exist in pediatric health care: child, family, or person [ 33 ]. This study focuses on person-centeredness, as this closely follows the caring process and includes the child and the family [ 34 ]. In pediatric symptom assessment, a person-centered approach could help in selecting and providing optimal treatments [ 26 , 35 ].…”

Section: Introductionmentioning

confidence: 99%

“…In health care, the need to implement person-centered care is growing [ 36 , 37 ]. Person-centered care aims to create partnerships among patients, families, carers, and health care professionals [ 34 , 37 ]. As defined by the Gothenburg model for person-centered care, the three routines of this approach are as follows: (1) initiating a partnership by eliciting the patient’s narrative, including goals, capabilities, and limitations; (2) building the partnership through the cocreation of a health plan promoting the patient’s self-efficacy and self-care; and (3) safeguarding the partnership by documenting the patient’s story and health plan to support the continuity of care [ 37 , 38 ].…”

Section: Introductionmentioning

confidence: 99%

“…As defined by the Gothenburg model for person-centered care, the three routines of this approach are as follows: (1) initiating a partnership by eliciting the patient’s narrative, including goals, capabilities, and limitations; (2) building the partnership through the cocreation of a health plan promoting the patient’s self-efficacy and self-care; and (3) safeguarding the partnership by documenting the patient’s story and health plan to support the continuity of care [ 37 , 38 ]. A European Union standard for patient involvement has recently been launched to facilitate pediatric person-centered care [ 34 , 39 ].…”

Section: Introductionmentioning

confidence: 99%

“…This study is based on the child’s perspective, meaning that the child’s needs and experiences are central. It strives for a child-centered approach by listening to the child’s preferences and taking into account the adults’ views on what is in the best interests of the child [ 34 , 39 , 40 ]. Research shows that parent-centered communication styles can feel disempowering for children, whereas communication tailored to child-centric communicative and developmental needs gives them a sense of respect, safety, and control.…”

Section: Introductionmentioning

confidence: 99%

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The Development of an mHealth Tool for Children With Long-term Illness to Enable Person-Centered Communication: User-Centered Design Approach

Wiljén¹,

Chaplin²,

Crine³

et al. 2022

JMIR Pediatr Parent

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Background Children with long-term illnesses frequently experience symptoms that could negatively affect their daily lives. These symptoms are often underreported in health care. Despite a large number of mobile health (mHealth) tools, few are based on a theoretical framework or supported by scientific knowledge. Incorporating universal design when developing a product can promote accessibility and facilitate person-centered communication. Objective The aim of this study is to identify the symptom-reporting needs of children with cancer and congenital heart defects that could be satisfied by using a mobile app. Another aim is to evaluate how the child might interact with the app by considering universal design principles and to identify parents’ views and health care professionals’ expectations and requirements for an mHealth tool. Methods User-centered design is an iterative process that focuses on an understanding of the users. The adapted user-centered design process includes 2 phases with 4 stages. Phase 1 involved interviews with 7 children with long-term illnesses, 8 parents, and 19 health care professionals to determine their needs and wishes for support; a workshop with 19 researchers to deepen our understanding of the needs; and a workshop with developers to establish a preliminary tool to further investigate needs and behaviors. Phase 2 involved interviews with 10 children with long-term illnesses, 9 parents, and 21 health care professionals to evaluate the mock-up (prototype) of the mHealth tool. Data were synthesized using the interpretive description technique. Results A total of 4 aspects of needs emerged from the synthesis of the data, as follows: different perspectives on provided and perceived support; the need for an easy-to-use, non–clinic-based tool to self-report symptoms and to facilitate communication; the need for safety by being in control and reaching the child’s voice; and a way of mapping the illness journey to facilitate recall and improve diagnostics. The children with long-term illnesses expressed a need to not only communicate about pain but also communicate about anxiety, fatigue, fear, and nausea. Conclusions The findings of this study indicated that the PicPecc (Pictorial Support in Person-Centered Care for Children) app is a potential solution for providing communicative support to children with long-term illnesses dealing with multiple symptoms and conditions. The interview data also highlighted symptoms that are at risk of being overlooked if they are not included in the mobile app. Further studies are needed to include usability testing and evaluation in hospitals and home care settings.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

The Development of an mHealth Tool for Children With Long-term Illness to Enable Person-Centered Communication: User-Centered Design Approach

Wiljén¹,

Chaplin²,

Crine³

et al. 2022

JMIR Pediatr Parent

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Adolescents' experiences of Help Overcoming Pain Early—A school based person‐centred intervention for adolescents with chronic pain

Wallbing

Nilsson

Wigert

et al. 2023

Paediatric and Neonatal Pain

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To illuminate adolescents' experiences of Help Overcoming Pain Early (HOPE), a person‐centred intervention delivered in a school setting by school nurses. Twenty‐one adolescents with chronic pain recruited from secondary school, who had completed the HOPE intervention, were included in the interview study. The HOPE intervention was built on person‐centred ethics and consisted of four meetings between school nurses and adolescents on the subject of stress and pain management. A qualitative method using content analysis with an inductive approach was employed. In the interviews, the adolescents describe how they reclaim their lives with the help of HOPE. They use different strategies and parts of the intervention to move on with their lives. A trustful relationship, as that with the school nurse, was essential to dare to change. The overarching theme summarizes in Becoming myself again and is built up by three sub‐themes: Trust a pillar for growth, Making sense of my life with pain, and Putting myself into the world again. A person‐centred intervention such as HOPE applied in a school context is promising for promoting confidence in adolescents with chronic pain. A trust‐building process emerged, in terms of both the adolescents' trust in the healthcare staff they meet and their confidence in their own ability to handle and influence their situation, which in the long term can promote trust in themselves as a person.

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Special issue on “Children's and adolescents' rights to participate in their pain management”

Bornman,

Nilsson

2023

Paediatric and Neonatal Pain

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Being heard – Supporting person‐centred communication in paediatric care using augmentative and alternative communication as universal design: A position paper

Cited by 22 publications

References 50 publications

The Development of an mHealth Tool for Children With Long-term Illness to Enable Person-Centered Communication: User-Centered Design Approach

The Development of an mHealth Tool for Children With Long-term Illness to Enable Person-Centered Communication: User-Centered Design Approach

Adolescents' experiences of Help Overcoming Pain Early—A school based person‐centred intervention for adolescents with chronic pain

Special issue on “Children's and adolescents' rights to participate in their pain management”

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