A qualitative study to explore the views and experiences of children
Research type
Research Study
Full title
A qualitative study to explore the views and experiences of children with complex health needs and those of their families on the provision of healthcare.
IRAS ID
253492
Contact name
Jean Rankin
Contact email
Duration of Study in the UK
0 years, 11 months, 31 days
Research summary
Research Summary
The proposed study, undertaken over 1 year, is ‘A qualitative study to explore the views and experiences of children with complex health needs and their families on the provision of healthcare'.
It uses Interpretative Phenomenological Analysis (IPA) as the methodology and semi-structured interviews as the method. Interviews will be held at participants' home or school. IPA explores how participants make sense of their personal and social world (Smith and Osborn, 2007).
The researcher analyses in depth how participants perceive and make sense of things happening to them. Smith and Osborn (2007) state that it is best to collect data for IPA study through the semi-structured interview method.
Purposeful sample for study:
7 children who have complex health needs* and aged between 8 years to 15 years
Parent or guardian for each child
Maximum of 15 participants
Number involved is in keeping with the recommendations of researchers who are experienced in IPA methodology and who advise that the number of participants must be small to enable rich quality data on lived experiences be gathered
*Definition of a child who has complex health needs:
‘a child needing additional help to those of their peers with activities of everyday living, help required may include assisted technology’.
Examples:
•Help with breathing through a respiratory tube (tracheostomy)
•Help with feeding through a tube (gastrostomy)
•Help with communication through speaking aids or hearing aids.
•Help with language, such as interpreter, British Sign Language (BSL) Makaton or Talking Mats®Information from the interviews will capture and reflect true understanding of the participants’ stories, generating themes.
The interconnection of the themes bringing the focus back to the individual’s experience of their healthcare and how they live with their complex health condition.The findings will present the voice of a group of children who are seldom heard in research and their views may help inform the future provision of healthcare.
Lay summary of the thesis, ‘Views and experiences of children living with disabilities and complex health needs, and those of their families’.
The study ‘Views and experiences of children living with disabilities and complex health needs, and those of their families’, presents the views of children living in the southwest region of Scotland who are diagnosed with disabilities and complex health needs, including speech, language and communication needs (SLCN). The voices of this group of children, and those of their families, are seldom heard in relation to their healthcare experiences.
The premise held that children’s rights are enshrined in legislation and are protected to safeguard children is assessed by the Children’s Rights Alliance England (Williams, 2021). The standards of care and protection for children during their lives, and in all settings, including health services, is measured against the 54 articles of the United Nations Convention on the Rights of the Child (UNCRC, 2009) and this provided a major driver for the research. This thesis may provide researchers with the novel methods to engage children and families in research and the potential to seek the solutions for improving children’s participation and inclusion in research. This approach would uphold children’s rights as recommended within the UNCRC articles.
The study objectives and the thesis contributions, along with the study strengths and limitations are discussed in the thesis. In addition, the findings of the study are compared with the evidence currently available from researchers which were presented in the systemic review. The study provided an opportunity for the children and their families to tell their life stories and to paint a rich picture of their experiences through the application of a qualitative, phenomenological approach, influenced by Interpretative Phenomenological Analysis (IPA) and by using the qualitative semi-structured interview method.
Children who were living with SLCN and who previously had not had an opportunity to take part in research, were enabled to demonstrate their experiences through the use of the communication method and visual symbols developed within the Talking Mats® resource (Murphy,1998). This approach provided an understanding of the children’s own perspectives alongside those of their parents, providing insight into areas of agreement and dispute. A shared ability to adapt to the challenges of their health condition was evident from the findings, revealing the personal and familial resilience that the participants had developed in the face of their life adversities.
Whilst the lived experiences of the participants were unique, there were similarities in the findings and the themes identified by the children and their parents. The findings highlighted both the positive and negative aspects of living with disabilities, complex health needs and SLCN. An interesting finding was that the children and their parents had developed both strength and resilience from their experience of living with health uncertainty along with managing complicated medication and feeding regimens. The children and families were proud to have acquired coping strategies and the status of being deemed by health professionals as an ‘expert by lived experience’. The perverse of this positivity was that the children and families’ perceived expertise often led to their continually having to explain their situations and health conditions to service teams. The parents stated that the onus was regularly placed on them to provide training for staff involved in their children’s care, and this was perceived as an unfair and unrealistic expectation. In addition, parents believed that this situation constituted a denial of their right be recognised in the primary role of a mother or a father, and that they should not be seen as a member of staff or as an unpaid carer.The study findings inform health, social care and education providers what matters to children living with disabilities, complex health needs and SLCN when they receive services and provide a basis for the consideration of future research. In addition, the findings inform policy recommendations to promote children’s rights and safeguards through compassionate and intelligent leadership within healthcare. This approach may help to transform and improve the quality and sustainability of patient care and services by service planners and providers gaining and implementing patient feedback.
There is a recommendation for future research to be conducted with children experiencing complex needs, and with children who are living SLCN and disabilities. Further research may inform future policy and legislation on the quality of healthcare services. In addition, the implications for change of listening to the experiences of children and families may be highlighted along with how values-based inquiry may be applied to improve quality within children’s nursing practice and children’s services.
REC name
West of Scotland REC 4
REC reference
18/WS/0228
Date of REC Opinion
6 Feb 2019
REC opinion
Further Information Favourable Opinion