Personalising Supportive Healthcare for Immune-Mediated Inflammatory Disorders: A Qualitative Exploration of Patient Needs and Behaviours Based on the Subjective Health Experience Model

• – Describe each Segment individually in terms of behaviours, questions, and needs. Constantly refer to your own professional experience, envisioning individuals who typically fit within each Segment. Segments were defined either in small groups or individually, and the results were subsequently shared with the larger group.

• – What services do you offer to support and guide patients? Information was collected collaboratively and documented on a flipchart.

• – What type of support is typically suited to each Segment? A group discussion was conducted to determine this.

• – Describe your own condition and health experiences. Including emotional responses to the diagnosis, their need for support, and the impact of the condition on their daily life. Outcome was documented on flip charts.

• – Select the three most significant words for you and describe what they mean in your daily life. This was an individual task, followed by a group discussion.

• – Describe an individual at the bottom and top of their health ladder. What does the person need to ascend the ladder? What does the hospital provide? This was discussed collectively.

• – For each Segment (visual provided with a brief description based on input from healthcare professionals), what services does Frisius MC offer for this individual? This was an individual task, followed by group discussion.

Note: In TEAM interviews, words were typed and displayed on the screen; the video was not shown.

• – Adapt communication and tone to patient’s needs

•     ○ Patient initiates interaction and articulates needs

•     ○ Provide a clear overview when necessary

• – Offer tranquillity and perspective

•     ○ Help foster acceptance and promotes self-awareness

•     ○ Provide a structured treatment timeline

• – Maintain a connection over time

•     ○ Provide low-threshold access to contact (e.g. remote options)

•     ○ Offer positive reinforcement (“You’re doing well”)

•     ○ Continuously reassure availability of support

• – Be present

•     ○ Demonstrate openness and shows understanding (empathy and compassion) for the individual

•     ○ Acknowledge complaints and dedicate time

• – Share decision-making on the treatment plan

•     ○ Reciprocal thinking and dialogue

•     ○ Structure information and planning

• – Explore treatment options based on patient preferences (guided decision-making)

•     ○ Initially focus on the condition – subsequently on the treatment plan

•     ○ Gradually involve patient in the treatment plan and future possibilities

• – Routine-based, less frequent consultations

• – Provide an overview (role for nurse)

• – Discuss mental wellbeing alongside physical symptoms

•     ○ Early referral to appropriate professionals (e.g., psychologist, dietician)

• – Explain concise

• – Explain in more detail

• – Explain step-by-step, with repetition if necessary

• – Provide (relevant to patient context) and hand over

•     ○ New developments

•     ○ Overviews

• – Provide, review together, and hand over

•     ○ In sections

•     ○ Aftercare, e.g., understanding the information, follow-up calls

• – Inform about

• – Encourage attendance explicitly

• – Experts by experience at the forefront as inspiration

• – More remote: e-mail only

• – Less remote: phone (video call), email

• – More direct contact: hybrid, video call (phone), face-to-face

• – Direct contact: face-to-face preferred (with digital support as needed)

• – Department (reception – availability 8:00 – 18:00)

• – Limited (annually), tailored to the patients’ needs

• – Intensive

• – Referral channel

•     ○ Written

•     ○ Verbal (phone)

• – Is welcome (during consult)

•     ○ As a partner

•     ○ As a supporter (external commitment)

• – Actively involve (in consultation)

•     ○ As an ally

•     ○ As a motivator

• – Raise awareness (reliable source)

• – Discuss possibilities (e.g., peers)

• – Inform about

• – Discuss along with the caregiver

• – Inform about

• – Discus along with caregiver

• – Highlight importance and provide an overview of behavioural rules and available programmes

• – Encourage automate (new) behaviour by offering behavioural rules and available programmes

• – Discuss behavioural rules and available programmes explicitly

• – Offer guided aftercare and follow-up