Table 3 Conceptual and operation definition changes of each domain following feedback from participants
Domain | Domain Definition Round 1 | Domain Definition Round 2 | Final Definition |
|---|---|---|---|
Self-acceptance | -A positive attitude toward yourself; acknowledge and accept multiple aspects of yourself including both good and bad qualities; and feel positive about your past life. -based on internal validation - ALHIV accept themselves and overcome internalised stigma related to HIV | -Acknowledging and embracing every aspect of yourself including both good and bad qualities as you accept that this forms part of who you are. Therefore, it involves developing a realistic sense of self (understanding) – a subjective awareness of your strengths, weaknesses and circumstances - To be self-accepting implies accepting yourself unconditionally in the present despite past behaviours or circumstances. It involves accepting parts of ourselves that we may not necessarily like, without offering justification for any of them (e.g., ALHIV do not need to feel the need to justify their status, as indicated in our study on mental wellness discourses, ALHIV needed to overcome internalised stigma around HIV to accept themselves as ‘beautiful’ and ‘normal’ regardless of their status) (Orth & van Wyk, 2022), as well as acknowledging the worthiness that is inherent in each one of us despite our flaws and shortcomings. - Research shows that self-acceptance and self-esteem are conceptually different, yet closely related constructs. While both self-acceptance and self-esteem seem to show positive correlation with mental health outcomes, studies suggest that self-esteem is more closely related to affect, while self-acceptance relates to general psychological wellbeing (Popov, 2018). A high level of self-esteem is a prerequisite for self-acceptance. | No changes |
Self-esteem | A person’s overall subjective sense of personal worth or value -Self-esteem is based on external feedback and validation, therefore may fluctuate -ALHIV with high self-esteem talk about themselves in a positive light, highlight their best qualities | -Self-esteem is based on how we see ourselves in relation to our own expectations (internal assessments) and with others (external feedback and validation). Self-esteem can be influenced by many factors within our environment, especially during adolescence, such as socializing with others, school performance, self-efficacy etc. -Unlike self-acceptance, self-esteem can be divided into high or low self-esteem. -ALHIV with high self-esteem talk about themselves in a positive light, highlight their best qualities, feel confident and good about themselves, make choices that reflect a positive self-view | No changes |
Self-efficacy | -A person’s particular set of beliefs that determine how well one can execute a plan of action in prospective situations. Self-efficacy is a person’s belief in their ability to succeed in a particular situation. | -Self-efficacy is a person’s belief in their ability to succeed in a particular situation. It includes the belief in one’s ability to overcome and effectively negotiate life challenges and to complete goals and aspirations. | |
Adherence self-efficacy | -Belief in one’s ability to successfully adhere to treatment plans -ALHIV can successfully manage their treatment by taking it correctly and on time every day | -Belief in one’s ability to successfully adhere to treatment plans which may include ALHIV successfully managing their treatment by taking medication correctly and on time every day, maintaining appointments, collecting medication and observing other requirements outlined by their healthcare providers. Additionally, ALHIV can maintain their treatment plan even if they experience a change in circumstances or new stressors. | No changes |
Resilience | -The ability to mentally withstand or adapt to uncertainty, challenges, and adversity. -Includes having access to knowledge and resources to withstand or adapt to stressors. | -The ability to mentally withstand or adapt to uncertainty, challenges, and adversity. -The ability, determination, and strength to overcome stressful life situations - The ability to thrive despite obstacles or disadvantageous circumstances -Includes navigating access to knowledge and resources to withstand or adapt to stressors. | No changes |
Coping | -Coping refers to cognitive and behavioural efforts to manage (master, reduce, or tolerate) a troubled person-environment relationship. -ALHIV may engage in a range of coping mechanisms to deal with daily life stressors as well as those associated with managing a lifelong condition -This may include engaging in activities they enjoy, connecting with others, engaging in meaningful activities. | -Coping refers to positive cognitive and behavioural efforts to manage (master, reduce, or tolerate) daily life stressors in healthy ways. -ALHIV may engage in a range of coping mechanisms to deal with daily life stressors as well as those associated with managing a lifelong condition -This may include engaging in activities they enjoy, connecting with others, engaging in meaningful activities. | Wording change: -This may include engaging in enjoyable or meaningful activities and connecting with others to positively manage, reduce or address stressors. |
Connectedness | Sense that one has satisfying relationships with others, believing that one is cared for, loved, esteemed, and valued, and providing friendship or support to others -Feelings of belonging -Feeling taken care of, and wanting to take care of others (for ALHIV, this can come in the form of having family remind them to take medication, or reminding their family members to take medication in the case others in the household are HIV+) -ALHIV may experience support from clinic staff -Spending time with friends -Engaging in community activities | -Sense that one has satisfying relationships with others, believing that one is cared for, loved, esteemed, and valued, and providing friendship or support to others -Feelings of belonging and acceptance in different environments and contexts (i.e. family, school, community) -Feeling taken care of, and wanting to reciprocate by taking care of others which also fostered a sense of purpose and meaning (in our study, participants expressed that they felt taken care of when family members reminded them to take medication, or reminding their family members to take medication in the case others in the household are HIV+, wanting to do well in life so that they can support their loved ones) -ALHIV may experience support from family, clinic staff, spending time with friends, engaging in community activities | No changes |
Leisure activities | Engaging and participating in activities that bring enjoyment. -Like their peers, ALHIV engage in diverse interest and hobbies such as listening to music, sports, reading, dancing etc. these activities help them to cope, connect with others and find enjoyment in life. Additionally, engaging in such activities is indicative of a sense of physical wellbeing. | -Engaging and participating in healthy activities that bring enjoyment and relaxation (de-stress) -Like their peers, ALHIV engage in a range diverse interest and hobbies based on their personal interests, for example - listening to music, sports, reading, dancing etc. these activities help them to cope, connect with others and find enjoyment in life. Additionally, engaging in such activities is indicative of a sense of physical wellbeing. | No changes |
Spirituality | -Psychological process of bringing one’s attention to the internal and external experiences occurring in the present moment; concern for or sensitivity to things of the spirit or soul. -ALHIV may attend religious ceremonies and activities -Belief in a higher power -Connect with cultural heritage -For ALHIV, spirituality can help them cope with life stressors by finding meaning in situations | -Spirituality is a broad concept comprising of several key attributes, meaning and purpose, transcendence, connectedness, relationships and religiosity (Puchalski et al. 2014). Can include a experiencing a relationship or connection with a higher being or power outside oneself or the psychological process of bringing one’s attention to the internal and external experiences occurring in the present moment, concern for or sensitivity to things of the spirit or soul. Spirituality confers inner strengths, comfort, peace and wellness. Experiencing a sense of inner peace, contentment and happiness with oneself and others. -ALHIV may attend religious ceremonies and activities, express a belief in a higher power, connection with cultural/spiritual heritage and traditions. For ALHIV, spirituality can help them cope with life stressors by finding meaning in situations | No changes |
Hope | -Emotion characterized by positive feelings about the immediate or long-term future. -ALHIV show a positive attitude toward life and their future -Hopes and dreams for the future may motivate ALHIV to stay on treatment -Some hope to finish school, get a good job, get married, start a family or even a cure for HIV. -Like many adolescents, ALHIV may be idealistic about their future dreams (i.e., wants to be a singer or soccer star etc.). | -Process of thinking about one’s goals, along with the motivation to move towards those goals (agency) and ways to achieve those goals (pathways) Emotion characterized by positive feelings about the immediate or long-term future. Optimistic view of the future and life that will lead to positive outcomes. - For ALHIV it contributes to a “process of meaning-making which enables people to psychologically cope with the stressful life event of HIV infection and helps them to maintain a psychological balance” (Plattner and Meiring 2006: 244). -Indicative in ALHIV showing a positive attitude toward life and their future -Hopes and dreams for the future may motivate ALHIV to stay on treatment. Some hope to finish school, get a good job, get married, start a family or even a cure for HIV. Like many adolescents, ALHIV may be idealistic about their future dreams (i.e., wants to be a singer or soccer star etc.). | No changes |
Purpose in Life | -You have goals in life and a sense of directedness; feel there is meaning to your present and past life; hold beliefs that give life purpose; and have aims and objectives for living. -More than hope (less idealistic, more realistic), purpose in life represents a sense of purpose in their lives like caring for their younger siblings or family members -Sense of responsibility -Identified goals and understands the steps needed to reach them | - Adolescence is a formative period for cultivating a sense of purpose in life. -You have goals in life and/or a sense of directedness; feel there is meaning to your present, past and future life. Purpose is a part of one’s personal search for meaning, but it also has an external component, the desire to make a difference in the world, to contribute to matters larger than the self. More than hope (less idealistic, more realistic), purpose in life represents a sense of meaning in their lives like caring for their younger siblings or family members, developing goals to achieve future success | No changes |