Author & Title:

Authors: Maggie Lawrence & Sue Kinn.

Title: Needs, priorities, and desired rehabilitation outcomes of family members of young adults who have had a stroke: findings from a phenomenological study.

Maggie Lawrence is a lecturer at Glasgow Caledonian University, Scotland, UK, where she works in the Institute for Applied Health Research/School of Health and Life Sciences.

Sue Kinn works in Scotland, UK, at the Research and Evidence Division, Department for International Development, in East Kilbride.

Both authors have the relevant expertise to write a paper on this subject. They are also distinguished professionals with valuable experience Health and Life Sciences.

Research Approach & Design

A qualitative approach based on Merleau-Ponty’s existential phenomenology.

The researchers adopted a qualitative approach, supported by Merleau-Ponty’s existential phenomenology, thus enabling them to explore the experiences of family members in relation to stroke. This approach to research is appropriate to the research question because it provides a general way of thinking about a problem (Smyth, 2013). This approach serves as a primary exploratory research aimed at providing valuable insights relating to the opinions, reasons, and motivations about the research question (Ritchie, Lewis, Nicholls & Ormston, 2013). More importantly, this approach helps the researchers to gain a better understanding into the issue, enabling them to develop hypotheses or ideas that would serve as the basis for potential quantitative research. The use of Merleau-Ponty’s existential phenomenology is also appropriate because it highlights a focus on the individual’s subjective interpretations and experiences of the world (particularly, the issue at hand), thereby enabling the researchers to understand how they perceive the problem (Hamrick, 2013).

Sampling & Sample size

This research involved 11 participants (all family members) who participated in 24 interviews conducted over a span of 2 years.

This research used purposive sampling to get the participants.

The sampling population of 11 family members included spouses, parents, siblings, and children. They all participated in 24 interviews conducted over a 2-year period. Subsequently, the researchers used an iterative process of critical reflection to identify priorities, family-centred needs, and the related rehabilitation outcomes.

The researchers used purposive sampling in which they were able to recruit 10 young adults with stroke, and where those adults had developed the condition between 3 months and 24 months prior to recruitment (Ritchie, Lewis, Nicholls & Ormston, 2013).

As this was a qualitative research taking a phenomenological approach, the sample size was appropriate for the research approach that was chosen. The selected approach does not require the sample size to be too large as that might affect the researchers’ ability to analyze data properly. The sample size of 24 would be sufficient to support the aims that the researchers intend to achieve. This sample size would also help to ensure that the researchers do not waste a lot of time collecting and analyzing unnecessary data (Levy & Lemeshow, 2013). Therefore, researchers should be careful to pick appropriate sample sizes as that has an effect on research results.

Data collection

The researchers used a longitudinal qualitative interview in this study.

The researchers used a longitudinal qualitative interview in this study. This data collection method was appropriate for the phenomenological approach used in this study because the interview focused (focus group interview) on a few selected individuals. Focus group interviews are critical in qualitative studies that adopt a phenomenological approach because it provides the researchers with the opportunity to ask the participants about their beliefs, opinions, attitudes, and perceptions regarding a particular issue or problem, in this case, the problem of stroke.

This method provides participants with the opportunity to provide spontaneous accounts of their experiences and thoughts regarding certain issues of interest to the researcher (Maxwell, 2012). Therefore, focus group interviews enable researchers to acquire multiple levels of information from the questions presented in the interviews. Through this method, researchers are able to gather the reactions and interactions of participants and to determine if there is group consensus. More importantly, the interviews are likely to lead into unexpected conversations, not initially intended, but which prove quite valuable to the study.

Through these accounts presented in the interviews, the researchers would then be able to make proper analyses and provide informed descriptions of a particular phenomenon under review. In this particular study, the researchers aimed to describe the major aspects that are critical in patient-centred rehabilitative care as presented from the accounts of young adults (and their families) who have had a stroke.

Analysis

This study used an iterative three-stage process of phenomenological analysis, consistent with the supporting phenomenological approach.

As noted, the researchers used an iterative three-stage process of phenomenological analysis, consistent with the supporting phenomenological approach. In the first stage (phenomenological description), the researchers adopted a phenomenological position during the interviews, thus enabling them to obtain spontaneous accounts of the participants (Ritchie, Lewis, Nicholls & Ormston, 2013). In the second stage (phenomenological reduction), the researchers demonstrated their knowledge and experience in this subject to bear on the data. The researchers also used a process of critical reflection that enabled them to understand the phenomenon from different perspectives. In this study, critical reflection required the researcher to listen to the interview recordings repeatedly while at the same time reading the transcripts.

In addition, the researchers involved an Advisory Group, which played a critical role in ensuring reliable analysis, because their considered and spontaneous responses provided diverse perspectives to the anonymised interview excerpts.

This study identified Meaning units and themes, which were critical in enhancing the quality of the analysis. Further, the researchers used a conceptual framework to support the process of phenomenological reduction, which incorporated existential concepts such as Body, Time, World, and Other. In the third stage, the study developed a phenomenological interpretation, which facilitated the development of a theoretical framework through modelling, writing, and the iterative process of reflection. The researchers also met with other experienced qualitative researchers and had discussions on how the themes in the second stage related to one another, to develop a thematic framework, and to identify overarching themes. The thematic framework is critical in this study because helps to enhance one’s understanding of how specific existential ideas improve understanding of the issue under investigation.

Results or findings (edit heading to suit article)

This study reported the results in a clear manner, enabling the reader to understand how the researchers arrived at their conclusions.

In this research, 9 of the 10 participants (young adults) were involved in the recruitment of eleven family members. The researchers provide a clear indication of the manner in which all the participants were recruited. The study also provides details of the participants such as their age ranges and the settings in which they lived. The study also reports the duration range of the interviews and the position of the participants in their families such as fathers, mothers, siblings, daughters, and spouses/partners. The researchers recoded the interviews digitally and were also all transcribed. The researchers invited the participants to take part in 4 interviews conducted over a 2 year period and at 6 month intervals. However, all the participants could not comply with the request with the exception of one. Some of the reasons noted for non-compliance include family and work-related stress and terminal illness in the family. The researchers also reported that family members experienced disappointment because their lives appeared to be disrupted irrevocably and also developed a sense that their lives were being taken for granted. These finding are all clearly and elaborately reported in the study, enabling the reader to understand how the conclusion was reached (Ritchie, Lewis, Nicholls & Ormston, 2013).

Validity & reliability OR Trustworthiness & credibility, Rigour (edit heading to suit article)

The researchers have ensured validity and reliability by involving rigor, making ethical considerations, choosing an appropriate research design, providing sufficient detail, and using credible sources.

The researchers have involved rigor in their work by incorporating transparency and systematicity. These two qualities are critical in ensuring rigor in qualitative research. The research approach was a phenomenological approach, which means that the researchers have a great role to ensure transparency in presenting and reporting the data collected (Ritchie, Lewis, Nicholls & Ormston, 2013). In this case, the researchers ensured to avail and document all the decisions they made during the research. In particular, the researchers clearly stated the research design of this study and also ensure to describe and justify it appropriately to the reader. There was systematicity in this research because the researchers ensured to apply congruent methods for analysis and data collection in a consistent manner throughout the research. More importantly, the researchers ensured to discuss and record the deviations that they made from the study protocol. In addition, the researchers have ensured to provide readers with sufficient detail to justify their decisions and conclusions.

The researchers also made important ethical considerations in this study to ensure that it meets all the standards required for qualitative studies (Maxwell, 2012). This research is reliable because it was approved by the National Health Service Central Office for Research Committees and the university Ethics Committee. For instance, they ensured to observe the Principles of Research Governance such as anonymity and seeking informed consent throughout the study. These measures were critical in protecting participants. During the interviews, there was the possibility that some participants could become distressed, especially because of the subject and the serial nature of the interviews. In this case, the researchers arranged for the participants to access a national stroke helpline or to visit a local Stroke Nurse Specialist.

Discussion

The study provided a comprehensive and enlightening discussion because it considered previous works on the same topic.

This study presents findings from a qualitative enquiry of the experience of stroke as presented from the accounts of family members of young adults dealing with the stroke. The researchers discuss the design and conduct of the research in detail, enabling the reader to understand the major precepts of Merleau-Ponty’s existential phenomenology. The phenomenological investigation showed that the experience of family members of young adults dealing with stroke was grounded in Disrupted and Altered Relationships; Situatedness; and time. The researchers discuss a previous study conducted on the same issue by Banks and Pearson where the focus is on young adults and their partners coping with stroke. The study reveals that the experiences of persons dealing with stroke are “universal” and not confined to family members of young adults. From the qualitative findings, it was possible to extrapolate the needs of families’ and the related rehabilitation effects in the short, medium and long-term after developing stroke (Ritchie, Lewis, Nicholls & Ormston, 2013). The study reveals that there have been many arguments over recent years in support of family-centred solutions to rehabilitation. However, there has been little guidance as far as appropriate interventions are concerned. The researchers in this study discussed discuss key findings and the related family-centred needs, ensuring to determine the interventions that would be appropriate with the aim of promoting a multidisciplinary rehabilitation practice period in which a person recovers from stroke. As the researchers note, family members of young adults who have had stroke is quite challenging because it is it mainly characterized by worry and uncertainty. It is also noted that a person with stroke tend to develop a sense of mortality after the initial stroke event. Family members also tend to realize that they need to have more appreciation to life more and that life causes them to develop some form of fear because of its uncertainty. Therefore, rehabilitation professionals need to acknowledge and focus on promoting and developing familial caring relationships and listening to the concerns of family members because it helps to address their worries and fears. In addition, the rehabilitation professionals should ensure to provide appropriate psychological interventions to facilitate healing and recovery. The researchers also noted that recent psychological care guidance following stroke rarely mentions the need to consider families’ needs.

Strengths & limitations

The authors specifically identified a number of limitations in this study including a small sample size, lack of heterogeneity in the sample, and sporadic participation in the interviews.

There were a number of limitations that the researchers specifically identify and discuss in this study. One identifiable limitation of this study is the small sample size. However, it is common to find that phenomenological studies are associated with small numbers. In these types of studies, between 6 and 12 participants is considered to be appropriate. In this particular study, eleven family members participated, which means that it met the methodological criterion. The other limitation of this study was the fact that it lacked heterogeneity in the sample, especially with regard to ethnicity, gender, and severity of stroke (Ritchie, Lewis, Nicholls & Ormston, 2013). Most participants in this study were females, which might be a reflection of the characteristic “carer” role that they play in the society. This also implies that informal carers are most likely to be female. The researcher recruited the participants from two major cities in the UK, which means that it would be expected that the sample would be more representative in terms of ethnic groups. However, the participants in this study were all Caucasians. There was also a limitation in terms of severity of stroke because only family member was identified to have severe stroke. In this study, it happened that most of the young adult participants had achieved good levels of recovery, and this also means that they hardly displayed any “visible” effects of stroke. It also emerged that younger adults with stroke have significantly higher chances of recovery when compared to older adults with the same condition.

Therefore, chances are high that the study participants were representative of the young adults with stroke in the wider population. As far as gaining understanding in relation to the long-term experience perception and the related needs and consequences, participation was sporadic. This was especially the case at Time 4, where there were only three family member participants in interviews. The 6 participants at the Time 3 and/or were instrumental in enabling the researchers to gain a longitudinal perspective. The researchers noted the need to develop a more flexible timetable in the future to facilitate effectiveness in the interviews, especially with regard to their sustained involvement.

Implications of the study findings for practice

This research has significant implication for practice because it promotes a family-centred approach to rehabilitation, which may improve practice as well as boost service provision.

This qualitative phenomenological study provided valuable findings that enabled the reader to develop a deeper understanding of stroke from the experiences of family members with young adults with stroke. This study is significant because it contributes a lot to the numerous research studies that provide evidence that promote a family-centred approach to rehabilitation. This research enables rehabilitation professionals and family members to develop tables that would help to identify the needs and outcomes of persons with stroke. The rehabilitation professionals can achieve this by drawing on their professional expertise and the available research evidence. This approach to the problem may enable the rehabilitation professionals to use the findings of this research to identify short, medium, and long-term rehabilitation priorities and needs of patients and their family members. In addition, the rehabilitation professionals can choose appropriate interventions that align with the needs and outcomes identified based on family needs throughout the recovery course of the stroke (Moustakas, 1994). Using the information and evidence derived from this study, members of the multidisciplinary team start involving family members in the development of meaningful goals that would be beneficial not only to patients, but to their families and the rehabilitation professionals as well.