The Impact of Engagement on Wellbeing

Action Research Findings

Results of the People Powered Health and Wellbeing Reference Group’s Action Research Project

Background

Funding received for an action research project, initially focused on a “year in the life” of PPHW reference group members. Four members formed an Action Research Group. With support from PPHW and staff from the University of Strathclyde they carried out the complete project.

Guiding principles

  • All participants are equal.
  • Adapt as you learn.
  • Partnership at every stage of the process.
  • Share control of the agenda and learn from one another.

Self-determined

The research team decided to moved away from the “year in the life” concept – preferring to focus on a topic that reflected their shared interests and passions as a group.

Key research questions

“Can engagement and inclusion promote wellbeing and recovery and, if so, how?”

  • What experiences do different groups have of engagement and inclusion with services – locally or within wider society?
  • How does experience of engagement and inclusion impact on people’s health and wellbeing?
  • What helps and hinders inclusion and engagement?

The Process

Individual Reference Group members carried out their own research projects. All had training and support to develop methods suitable for their topic.

Members explored how to ensure confidentiality, participant protection and identify relevant and appropriate samples for meaningful analysis. They also met regularly to share knowledge and experience, problem solve and make decisions.

Support via telephone and one to one meetings was given by the ALLIANCE and University of Strathclyde staff.

The Individual Projects

Glenn Merrilees

Glenn Merrilees

Explored perceptions of people who have experienced mental health problems by interviewing a Creative Expressive Writing Group at the Hope Café. What impact did this activity have on their wellbeing and recovery?

 

Key findings:

  • The group shared experiences and skills well.
  • Writing as a creative outlet for emotions aids recovery.
  • Creative writing records personal experience and promotes insight.
  • People had valuable time to focus on themselves and express in writing what they can’t say out loud.
  • Attendance improved connectedness, confidence and selfesteem.
  • Producing a booklet to showcase their work gave a clear sense of achievement, increasing well-being, confidence and self-esteem.
  • Their shared identity (experience of mental health problems) created a real sense of inclusion.
  • The chance to tackle stigma and discrimination through the written word was valued.
  • Without shared activity many members would have been further isolated and excluded.

“Hope Café is a supportive environment… It was inclusive and wasn’t pretentious.”

“…We’re all so different but it was amazing what came together … better than two people or doing it on your own.”

“We are good at saying ‘I’m not very good at this’, but in a relaxed environment it doesn’t matter what you write, it’s right – that really helped.”

 

Linda Jane McLean

Linda Jane McLean

Explored with local community members their experience of engaging with GP services with a specific focus on end of life care.

Key findings:

  • Engaging with health services can be challenging and can make people feel even more excluded.
  • GPs are not easy to engage with and limited appointment times mean patients often feel excluded.
  • Not seeing the same professional on a regular basis reduces inclusion.
  • Where GPs are actively engaged in the community, patients feel more included in their care.
  • End of life care can be a difficult subject and inclusion in the process depends on relationship with the GP and other health professionals.
  • Engagement in end of life care requires respect from health professionals.
  • Choice in your care and treatment promotes inclusion.
  • GPs as allies and listeners are more likely to promote inclusion.

 

“I need to motivate them to help me. This is a horrible thought, really. You have to champion yourself.”

“It’s a symbiotic relationship with no chance to get off the ground because of the shortness of time available.”

“Support stops at the door again.”

What made a successful GP/Patient relationship?

“He is on my side.”

“She showed me what she was thinking, but before that she asked what I was

Carmel Young

Carmel Young

Explored the impact of volunteering in community garden and hospice settings on engagement and inclusion.

 

Key findings:

  • Barriers to volunteering include low understanding of role, not being valued, too many commitments and a lower expectation for younger people.
  • Volunteering benefits both the volunteer and the beneficiaries.
  • Well-being and inclusion are closely connected: volunteering allows people to share and learn skills, do something meaningful and meet others.
  • Being outside in a garden itself benefits well-being.
  • While one person is volunteering, others in the family have more quiet time for themselves.

“Meeting other people, learning new skills, learning about biodiversity.”

“Getting back to nature and creating a tranquil therapeutic space.”

“I’ve moved house like many people of my age, needing to downsize and be nearer close family. I didn’t know another soul in the village and being part of the community group helped me make friends and network.”

“It’s just nice to see people coming together, helping each other out and raising money for the hospice.”

“So good to meet new people with shared interests.”

 

Volunteering

David Howie

David Howie

Explored the experience of people involved in conTAK/Youth Cancer Forum Scotland support group – all with experience of a long-term condition. Used an online survey with range of members, followed by a focus group to explore the survey findings in more detail.

 

Key findings:

  • Social isolation is a significant problem following and during a long-term condition.
  • Involvement in peer groups such as conTAK improves wellbeing through social contact and the chance to share concerns/issues.
  • Provides an outlet for feelings and ideas about recovery.
  • Recovery eased greatly with peer support groups.
  • Can lead to other opportunities such as volunteering.
  • Increased confidence and self-esteem aids wellbeing.
  • Gives individuals skills to share their own experience and provide support to others.
  • Online social networks lose the emotion and reduce chances of meaningful dialogue between peers.

“I was less confident before ConTAK/YCFS.”

“…Definitely strengthened my confidence, self-esteem.”

“…Did help being part of a group such as YCFS in that there was always an outlet i.e. non judgmental escape.”

 

Support groups

 

Common themes

Benefits of inclusion and engagement activities

  • Sharing experiences creates shared identity.
  • Promotes increased confidence and well-being and aids recovery.
  • Reduces fear of sharing anxieties and trying out new skills.

How to include and engage with people

  • Organisations need to be open to inclusive practice, willing to learn from people’s lived experience and be flexible in how they approach engagement, especially in giving time for relationships to develop.
  • Provision of purposeful activity aids and enhances recovery and inclusion.
  • Encourage people to engage more by acknowledging their strengths, promote self-care and self-management.
  • Create opportunities for learning to be shared – between professionals and those with lived experience.

What impacts on the opportunity to be included and engaged?

  • Involvement in purposeless activity reduces wellbeing and confidence.
  • Not being listened to or respected reduces wellbeing and the ability to recover.
  • Life disruptions impact on ability, long term conditions and mental health problems to be included and engaged.
  • Lack of information and support reduces the opportunity to participate.

 

Engagement group photo

 

The Researcher Journey

Reference group members met monthly from August 2014 to December 2015 to discuss each stage of the project and plan its effective delivery. Training and support was provided by PPHW and University of Strathclyde staff and included:

  • The purpose the process of ethics.
  • Different research methods.
  • Identifying and securing a sample.
  • Data analysis.

Group members concluded the main learning points from their experience were:

  • Everything takes three times longer than you think!
  • Preparation is key to getting it right.
  • Ethics are important to protect you and the participants, and seeking ethical permission helps you to think through the methods and sample.
  • Finding participants (sample) can be challenging, have a plan B.
  • Support is important in between the stages of the project.
  • Research can be undertaken by anyone!

New to research – each member learned a great deal from the experience. And, their willingness to learn and enthusiasm and passion for their individual topic helped them through this challenging process.

People Powered Health and Wellbeing ‘Shifting the Balance of Power’. An ALLIANCE programme co-produced by members and stakeholders.

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