Generational perspective on asthma self‐management in the Bangladeshi and Pakistani community in the United Kingdom: A qualitative study

Abstract Background Self‐management strategies improve asthma outcomes, although interventions for South Asian populations have been less effective than in White populations. Both self‐management and culture are dynamic, and factors such as acculturation and generation have not always been adequately reflected in existing cultural interventions. We aimed to explore the perspectives of Bangladeshi and Pakistani people in the United Kingdom, across multiple generations (first, second and third/fourth), on how they self‐manage their asthma, with a view to suggesting recommendations for cultural interventions. Methods We purposively recruited Bangladeshi and Pakistani participants, with an active diagnosis of asthma from healthcare settings. Semi‐structured interviews in the participants' choice of language (English, Sylheti, Standard Bengali or Urdu) were conducted, and data were analysed thematically. Results Twenty‐seven participants (13 Bangladeshi and 14 Pakistani) were interviewed. There were generational differences in self‐management, influenced by complex cultural processes experienced by South Asians as part of being an ethnic minority group. Individuals from the first generation used self‐management strategies congruent to traditional beliefs such as ‘sweating’ and often chose to travel to South Asian countries. Generations born and raised in the United Kingdom learnt and experimented with self‐management based on their fused identities and modified their approach depending on whether they were in familial or peer settings. Acculturative stress, which was typically higher in first generations who had migration‐related stressors, influenced the priority given to asthma self‐management throughout generations. The amount and type of available asthma information as well as social discussions within the community and with healthcare professionals also shaped asthma self‐management. Conclusions Recognizing cultural diversity and its influence of asthma self‐management can help develop effective interventions tailored to the lives of South Asian people. Patient or Public Contribution Patient and Public Involvement colleagues were consulted throughout to ensure that the study and its materials were fit for purpose.


BOX 1. Acculturation strategies adapted from
Berry's acculturation model 18,19 The acculturation model suggests that individuals or groups can freely adapt to a new or mainstream environment in one of four ways, over time or generations, and its flexible nature can be dependent on a given situation. These four adaptations are known as acculturation strategies: cultural and economic capital from migration, such as the absence of social support. 26,27 These acculturative contextual influences suggest that there are intergenerational variations in cultivating strategies for self-managing asthma by reacting to the environment around them. 18 Illness representations of asthma, for instance, can be guided by cultural influences that alter in accordance with experiences of education and migration. 10,28 However, the needs and preferences of selfmanagement across generations are rarely recognized within healthcare services, frequently relying on language adjustments in interventions and policies, which is not a culturally competent approach. 12,29 There has also been a tendency to focus primarily on the disease management side of self-management, such as medicine adherence, and overlook psychosocial and cultural factors important for people to improve their asthma. 5,12,30 This study aimed to explore the generational perspective of individuals from two South Asian subcultures-the Bangladeshi and Pakistani communities in the United Kingdom-on how they perceive and self-manage their asthma, and how culture influences this.

| Study design and setting
The study involved one-to-one semi-structured interviews of participants living in three ethnically diverse boroughs of London in the United Kingdom: Tower Hamlets, Newham and Waltham Forest.
Participants were recruited from both primary care (three GP practices) and secondary care (three hospital asthma clinics, including one tertiary service for individuals with severe asthma). GP services provide most of the asthma care for patients registered with their practice, including diagnosis, routine reviews, supporting selfmanagement and acute care. Secondary care asthma clinics support the management of patients with diagnostic or treatment queries, and the acute and follow-up care of severe asthma attacks, such as those requiring admission. The tertiary care severe asthma clinics specialize in the holistic and complex care of patients with 'difficult to control' asthma including those at risk of life-threatening attacks. In addition, the study was advertised through a recruitment poster that was placed in healthcare settings, social media and community organizations such as sixth form schools and colleges, local community centres and grocery stores, as well as Queen Mary, University of London student and staff societies and bulletins. This broad recruitment strategy aimed to reach as diverse a group of participants, with differing levels of asthma severity, as possible.
Participants were provided the option of completing the interviews at GP surgeries, hospital asthma clinics or Queen Mary, University of London.

| Participants
Participants were purposively sampled to represent genders, different generational statuses (first, second and third) and ethnicity (Pakistani or Bangladeshi). Calculation of sample size in qualitative studies is determined as data collection takes place. We took an approach of recruiting until data saturation with respect to the research question, that is, when a comprehensive understanding of perspectives was achieved. 31 Participants were included if they fulfilled the following inclusion criteria: (1) an active diagnosis of asthma, (2) aged 16 years or older and (3) of Bangladeshi or Pakistani ethnicity (self-identification was checked by researchers). Participants' self-reported generational status was reported in the expression of interest form and defined as follows 32 : 1. First generation (G1)-those born in South Asia or a country other than the United Kingdom and who settled in the United Kingdom.

| Patient and Public Involvement (PPI)
PPI colleagues from Barts Health NHS Trust and the community were consulted to guide study design and to ensure that the study materials, in English and South Asian languages, were fit for purpose (including the written and oral participant information sheets detailing the scope of asthma self-management, audio-recorded and written consent forms, study posters, interview schedule and eligibility forms).

| Data collection
An expression of interest form was completed by all individuals who showed an interest in the study. This asked individuals to indicate gender, age, ethnicity and generational status and complete three items (item 1, 3 and 20) selected from the Suinn-Lew Asian Self-Identity Acculturation scale (SL-ASIA), 33 validated for South Asian populations living in developed countries, 34 to identify the degree of acculturation amongst participants. PPI feedback suggested that the use of the full validated scale was neither acceptable nor had face validity. 33 Given that the scale was only utilized for purposive sampling, use of selected questions was considered acceptable.
The expression of interest form was used to purposively sample participants. Those eligible were asked to participate in an audiorecorded semi-structured interview. All participants were informed that data collected would remain confidential, anonymous and that they could withdraw from the interview at any time. Procedures recommended by Lloyd et al. 35 were followed to achieve full informed consent if participants were not able to read, write or speak in English.
An audio-recorded patient information sheet and consent form on CD or online audio format was provided in the languages Sylheti, Urdu and English, along with written copies. Plans were in place for verbal consent to be audio-recorded if participants could not provide initials or signatures. If needed, potential participants were given another chance to listen to the audio recordings before informed consent was taken in person by the bilingual researcher. Interview questions are presented in Table 1. Participants selected which language they preferred to speak in, and SA interviewed them (the primary researcher who is fluent in these languages; female; PhD student, health psychologist experienced in qualitative research).

| Data analysis
Interviews were digitally recorded. We transcribed interviews verbatim  35,39 QDA Minor software was used to support data analysis. The data were analysed using thematic analysis guidelines suggested by Braun and Clarke. 40 Table 2  as the steps taken for data analysis. To ensure consistency of interpretations, four researchers participated in independent coding of the data. SA coded all interviews, AD second coded the data (PhD student, an anthropologist experienced in qualitative research) and LS (an academic health psychologist) and HP (a clinical academic respiratory professor) group coded the data. The coding framework was compared, discussed and reviewed over time. Member checking was conducted to ensure the credibility of the interpreted data. Two participants contributed to this process, and the findings were reviewed by members of the PPI group to broaden perspectives. 41 As there were no significant differences between the data obtained from the third-and fourth-generation participants, and given the relatively small numbers in each group, these were grouped together.

| Reflexivity
To maintain the quality of research, SA (the primary researcher) took reflexive notes in a research journal after each interview, which were discussed with the wider team, and peer briefings. 42,43 These strategies helped to raise researcher awareness of reactions and how ideas were imposed during the research process and upon the research. 43 For instance, all participants were recruited from healthcare settings, with almost half interviewed in these settings. A few participants appeared to resent HCPs who they felt medicalized them. It is possible that these attitudes were displaced upon the researcher, who may have been perceived as an insider to the medical profession. The impact of the researcher standpoint was considered throughout the interpretation of the data.

| Participant characteristics
A total of 27 participants consented to participate in the study (see Table 3). Interviews ranged from 20 min to over 2 h. Thirteen participants were Bangladeshi, and 14 participants were Pakistani.
There were 14 females and 13 males, between the ages of 16 and 72 years, recruited from primary care (n = 15), secondary care (n = 11) and tertiary care (n = 1). One participant had severe asthma. There were 10 first-generation participants, 10 second-generation participants, 7 third-generation participants and 1 Bangladeshi fourthgeneration participant. Most second-and third-generation participants were diagnosed with asthma in childhood, including a first-generation Pakistani participant (n = 12). The degree of acculturation in the sample revealed that (see Box 1;

| Summary of themes
Data showed that there were intergenerational differences in asthma self-management, which were contextualized, often because of factors such as complex cultural processes relevant for South Asians as members of an ethnic minority group, thereby leaving a variable impact on self-management. Several sub-themes emerged from the data that were collated into two main themes: (1) self-management guided by cultural identity and its norms across generations and (2) self-management guided by the distribution of knowledge and discourses across generations (see Figure 1).

| Theme 1. Self-management guided by cultural identity and its norms across generations
This theme illustrates that the awareness of relationships with others in different social spaces orientated how participants self-managed asthma across generations. Second/third generations defined boundaries of cultural identity and its norms, which were negotiated, appraised and reflected upon. Enacted through acculturation and its stressors, this initiated a differential impact on self-management.
There were two subthemes.

| Theme 2. Self-management guided by the distribution of knowledge and discourses across generations
This theme illustrates available information/discourses on asthma and self-management from the community and healthcare services.
Enacted through social dialogues and medicalization, this orientated how participants made sense of asthma self-management across generations. There were two subthemes:

| Self-management orientated through social dialogues
The extent to which participants engaged in conversations about asthma with others shaped self-management, including illness beliefs AHMED ET AL.
| 2541 and the provision of social support. Participants from the first and second generation believed that asthma and its discussions were less important and common in the community than those concerning other illnesses such as diabetes and epilepsy.  Table 4. The first generations, who were typically older, were 'ideal' medical patients because they strictly adhered to medication and rarely sought medical attention, so they preferred to wait it out at home. One reason surmised for this was that they are familiar with habits of people from Bangladesh and Pakistan when it comes to approaching healthcare facilities.
T A B L E 4 Generational differences in perceived medicalization of the self that influence asthma self-management The younger first generations adhered to medication but sought medical advice earlier. UK-born generations adhered to medication, but took precautions against side-effects (actively choose which medication to take) and discussed asthma if it was necessary. When information was sought from other sources, the medicalized self was contested by a few individuals (the de-medicalized self; see Table 4).
Instead of a generic medical approach to asthma, these individuals believed that HCPs should recognize that asthma is heterogeneous, and that holistic tailored care is required.

| Interpretation of findings
The simplistic approach of tailoring cultural interventions solely through adaptations such as language modifications of resources [12][13][14] is challenged by the findings of this study, which reinforce that culture and self-management should not be treated as static. [6][7][8] South Asians are not a homogeneous cultural group, but nurture distinct intergenerational strategies for asthma selfmanagement, with adaptation through processes such as acculturation, illustrating that self-management needs to be socio-culturally and contextually relevant. 8,9,44  belief models, which stipulate that the removal of impurities from the body improves health. 49,52 The priority given to coping with acculturative stress rather than asthma self-management resonates with previous literature showing that intergenerational conflict occurs with a wide range of health behaviours such as tobacco use, 53  Family support was fragmented and limited to when asthma symptoms were observable, agreeing with previous research that found that support provisions were primarily restricted to incidences of asthma attacks or when there was a need for language translation. [66][67][68][69] However, the level of support from the immediate family for other illnesses (e.g., diabetes) was much higher. 70 It is unclear why there was more social awareness, acceptability, discourse or social support for other illnesses compared to asthma, but it can be related to perceptions of the seriousness of asthma. 71 The finding that there was more knowledge about medication than about asthma as a condition is concerning, especially in UK-born generations, who are fluent English speakers, and challenges previous studies, 48,68 including systematic reviews 12,72,73 that found that information on medication was difficult to digest for South Asians.
We found problems for retaining information related to using peak flow monitoring devices, which should be addressed in future bottom-up interventions can help met these challenges. The former accounts for shared group characteristics of a cultural group, such as cultural beliefs and the process of acculturation, while the latter considers cultural dimensions unique to individuals within a group, such as the level of religiosity. 12,14,77,78 Tailored exemplar interventions are rare in asthma self-management, illustrating that progress has been limited. There is some evidence of effectiveness for targeted interventions that have considered cultural relevance, by codeveloping resources with members of the community and/or HCPs and pilot testing in focus groups for clarity, relevance and acceptability, and refined before evaluation. 12 Crucially, incorporating these components into the development process can allow information to become more relevant and acceptable in a population. 13

| Strengths and limitations
Few studies have sought to understand asthma self-management in South Asians with a generational lens. 81 Recruited participants were from different parts of the healthcare service with varied experiences and perceptions of asthma self-management, although, in most first generation participants, recruitment was predominantly from secondary care, which can reflect the patients' consulting behaviour and/or the severity of their asthma. The breadth of our recruitment strategy enhances transferability to other similar settings for South Asian generations and other ethnic minorities. Despite our efforts, the adopted community recruitment approach was not effective. We must therefore be cautious in generalizing our findings to individuals from the third/fourth generation or who do not access healthcare systems for their asthma. It was a strength of the study that participants were able to participate regardless of the language spoken. Some participants chose to express themselves in their preferred language in interviews, even though they may speak English, and other generations switched between languages mid conversation, allowing cultural expressions to create certain meanings that cannot be articulated in English. 82 Data transcription and analysis in the original language spoken by participants (alongside English) helped avoid common criticisms of back translations, 83 and addressed cultural and linguistic gaps in transcribing data, 38,84 and was a strength of the study. Having a researcher from the population of interest was a further strength.

| CONCLUSION
Cultural diversity has a strong influence in shaping asthma selfmanagement, especially across generations and context, showcasing an important area for developing congruent guidance in tailoring interventions and implementing cultural competence strategies in healthcare services. Future research should build on this study and explore how HCPs provide self-management support to these communities while accounting for their cultural differences.